news.jpg

A collection of updates on Steven and the Foundation direct from Steven's family.


The 7th Annual 'Strokes Fore Stroke' Golf Tournament was a HUGE Success!!!

 

100 Golfers, 20 volunteers, a picturesque golf course and lots of sun, this was the recipe for the golf tournament this year, which was amazing.  The vast amount of raffles donated was just incredible.  Those Bruins jerseys were coveted items for sure. 

This years tournament was the most successful yet. Thank you to all the golfers , volunteers and family members who attended.


Here are the results:


1st Place  - Team Morris

2nd Place- Team Wallce

3rd Place- Team Tassone


Longest Drive - Ben Nardella

Closest to the Pin - Jabe

Putt off - Ron Van House

 

The photos from the event are currently being worked on and will be available soon.   Below are a few samples for your enjoyment.


Thank you again to everyone and we hope to see you next year!!!

 

DSC_87062.jpgDSC_84792.jpg

DSC_76352.jpg

IMG_1006.JPG

DSC_79052.jpg

Golf Tournament Planning is in Full Swing  (March 2016)

The Planning of the 7th Annual STH Stroke Foundation 'Strokes Fore Stroke' Golf tournament is in full swing.  Please come join us on Monday June 27th at the beautiful Butterbrook Golf Club.   We will have lots of awesome raffles , a car for a hole in one and contests along the course.   

 

See the events tab for registration details or click here

 

Angel Med Flight, who transported Steven home from Florida back in June of 2009 has spent a number of year documenting Steven and has just published his documentary as part of their My Real Life Moments series.  Click on the youtube link below to see the finished documentary.

Steven has been really busy, continuing his therapy at people fit and working hard at keeping himself in the best shape possible.

 

Steven has also been invited out to Bay Path University by our good friend Melinda Metzger to talk to her OT class about his stroke and his ongoing therapy with the myopro and the bioness. Stay tuned for an update.

 


THE PHOTOS ARE UP FOR THE 6TH ANNUAL STROKES FORE STROKES GOLF TOURNAMENT

 

CLICK HERE TO VIEW

 

A HUGE thank you to Steve Hill (Steven's dad) for the awesome photo's!!!

 

 

 

The 6th Annual Strokes Fore Strokes Golf

Tournament was a Huge Success!!

 

88 Golfers came out on Monday to help support the foundation and have some fun at the same time.   The day started out a bit shaky weather wise, but eventually the sun made it's appearance and it was a gorgeous day. 

Here is a list of our winners:

First Place Team  :   Kozi

Second Place Team:  Ward

Third Place Team: Doucette

Longest Drive : George Liss

Closest to the Pin:  Mike Upton

Putt Off:   Joe Dolci


We want to thank everyone, golfers, volunteers and the golf course for making this event so successful. Steven is continuing to improve and without the help of everyone involved that would not happen.  We are so greatful to everyone.  


The Photos from the event are being worked on and should be available soon , so check back frequently.

Here is a small collage that sums up the feelings of the day:

 

IMG_7560.JPG

Registration for the 6th Annual Steven T. Hill Stroke Foundation Strokes Fore Stroke Golf Tournament is up and running

 

Check out the events tab or click here for registration information

 

2015 has been a busy year so far amongst all the snow and winter woes. Steven has visited Myomo in Cambridge for a user work session. Programmers from Worcester Poly Tech have created several online games that the myopro can interact with.   Steven really enjoys this alot.  The Myomo team is also upgrading and doing some new things with the device in 2015 so stay tuned for some exciting updates. 

 

Steven is continuing with his acupuncture and loves it.  He looks forward to it every week and it has helped his overall well being. www.pointofhealingacupuncture.com   See below, Steven with Alison our acupuncturist.

IMG_6115.JPG

In October of 2014 Steven decided to take on a very hard task.  He decided to get healthy and lose weight.  So far to date with alot of hard work and exercise Steven is down over 20 pounds and is continuing to lose.  I for one am so proud of him.

Recently Steven got back into doing what he loves.  A friend asked to have him fix her laptop and it has  been his main mission the last few weeks.  I'ts great to see him get back to doing computers. 

As per the title above, the planning for the June golf outing is in full swing.  If you are interested click on the links above for registration information.  We look forward to seeing many of you at the tournament.

 

Happy Thanksgiving, Trotters!

We are so sorry to tell you that the run/walk portion of the event is cancelled.  
 
Thank you for your patience and understanding as we watched and waited to see what Mother Nature had in store for us.  We are so disappointed, as we know you are, too.  We have been advised not to hold the event, and we deem it wise to heed that advice. 
The bike path and Fiske school path are completely snow covered, the roads are narrowed due to the snowfall, nearly no sidewalks are cleared, and there are many icy spots.  It is simply not safe to send you all out on a walk or a run.
 
I hope you know how hard it is for us to cancel.  We've never had to cancel before - we've always gotten lucky with the weather.  Please accept our heartfelt apology.
 
PLEASE STILL JOIN US!

Our team of volunteers is already setting up the backyard with our usual muffins, munchkins, coffee and hot cocoa.  We have shirts for the first 100 registered.  We will still raffle off the prizes.  Please come and join us and share in the spirit of Thanksgiving!  (I could use a hug, frankly, and I'm willing to give you one, too.  From one runner to the next, I know how disappointing this is.)
 
Here's where we are:
11 Sherman Street
Lexington, MA 02420
 
The more the merrier!
 
Steven's niece, Jessie (9), will be collecting in-date non-perishable items for Our Neighbors' Table, a local food pantry.  She will be thrilled if you bring her some donations. 
 
Steven and his wife, Tanya, will be here to thank you for your support.  I know they want to see you and thank you in person.
 
Please, please, accept our deepest apologies.  

Any further questions, please email us or visit the website.
THANK YOU FOR UNDERSTANDING!

Kelly


October 2014

Hello family,friends, and supporters.  This summer sure has been a busy one for the monkey.   He finally received his Myopro device (www.myopro.com) and has been back in OT for a nine week program to learn to use the device functionally.  See video link below of some of the things he can do with it.

http://youtu.be/hVntcRVjPBg

10394522_10204409185376719_6145014233867699622_n.jpg

Steven showing off his new device

In August we took a trip North to visit my family and spent a long weekend enjoying the beautiful St. Lawrence Valley.  Then in late August my mom got sick and we spent a week up in Burlington Vt with her.  Steven was amazing. He participated in all the conversations with the Dr's, had great suggestions and asked excellent questions.   She is on the mend now and we are all thrilled about that.

Just this past week, Angel Medflight Worldwide Ambulance Service (www.angelmedflight.com) came to finish the documentary that they are preparing on Steven.    They started this in 2012 and came out to get an update.  They visited our house on Sunday and did interviews with us and the cats.  Monday they went to Steven's gym (www.peoplefit.net) and then on Tuesday they finished up at Steven's parents house interviewing them about Steven's journey.   Rebekah and Jeff were fantastic and we thank them for their time. We can't wait to see the final product.  

 

 

10408847_10152416073583471_1849938468029343363_n.jpg

Jeff from Angel Medflights filming our interview


The registration process for the 6th Annual Steven T. Hill Stroke Foundation Strides For Stroke is officially open.  

Visit  the events page or click here to register.   We look forward to seeing everyone on Turkey day for this event. 

June 2014

The 5th Annual Steven T. Hill Strokes Fore Stroke Golf Outing was a huge success!!

A sincere thank you to all who participated in making this event awesome.  The golfers, the volunteers and the man himself Steven. 

We were blessed with a gorgeous day that I couldn't have ordered up any better myself.  76 golfers made their way to Butterbrook Golf Course in Westford MA. 

After an 8am shotgun start the golfers enjoyed a round of 18 holes and encountered several contests along the way. 

Team Amara took 1st Place, Team Barnes 2nd and Team Grava 3rd.

Sean Fitzpatrick won the closest to the pin and Gordon Barnes won the longest drive.

A wonderful BBQ lunch was had, catered from Blue Ribbon BBQ. 

We had a large selection of wonderful raffles and we thank everyone who donated to this. 

As a result of this event and everyone's continued support,I am happy to announce that Steven will be receiving his own Myopro device this Wednesday July 2nd.  With this device we hope he will regain more movement in his right arm.   Please visit www.MYOPRO.com for more information and stay tuned for a more lengthly update once he has the device. 

Here are a few shots from the tournament and be sure to go here to see all the wonderful pictures taken by Steven's dad. 

ButterBrook2014DSC_9204.jpg

 

ButterBrook2014DSC_9243-Recovered.jpg

February 15, 2014

 

Happy New Year~

 

Sorry it’s been awhile since our last update.  Things have been very busy.  Steven started Acupuncture at Point of Healing Acupuncture in Milford with Alison Nelson www.pointofhealingacupuncture.com.  He is loving the treatments and is responding very well.  We would highly recommend her.  See below for treatment pictures.

 

IMG_3236.JPGIMG_3238.JPG

 

 

We had a bit of a scare right before the Christmas Holiday.   Steven had a localized seizure in his leg that would not stop and we had to make a trip to the ER.  They gave him some Ativan to stop the seizure and did a CT scan to rule out further complications.  The CT was clear, but they decided to keep him the night to make sure.   We were suppose to take off to go to NY to my sister’s for Christmas the next day,so we had to delay our trip to later in the day.   He was finally released around 3pm and we drove to NY.  Steven was a good sport.  We enjoyed a nice relaxing week at her house and had a wonderful holiday.

IMG_3542.JPG 

2014 arrived and I took a step back and marveled at all Steven has accomplished and that this May it will have been  5 years since his stroke.   We still are so hopeful for more progress as every day new treatments and devices are developed.  We are able to get these due to YOU our foundation supporters.  Without the foundation we would not be able to give Steven all these wonderful opportunities. 

Steven is continuing with OT at the Milford Regional Medical Center Rehabilitation here in Bellingham.  We are hoping that he will soon get his Myopro device and he will start therapy with that.  We are currently working with Myomo and the insurance company to get this device approved.   Steven just recently did a three hour video session with Myomo to produce a short video to show the insurance the necessity of this device.  We will post to our site when it is finalized.   It is pretty amazing.

Steven and I were not spared from the awful stomach flu that went around in January.  Steven  got it so bad that once again he was admitted into the hospital for 2 days.   Milford hospital is so great,  by now they know us (not sure if this is good or bad) and he was treated right away. 

Steven’s best high school friend Rik White visited yesterday , Valentine’s day and took Steven to lunch. They had a great visit and Steven loves to catch up with his friends.

We continue to be crazy busy but it is all good.  We say Thank you to all our supporters and please come back for our future updates.

29 NOVEMBER 2013

5th Annual 'Strides For Stroke' Turkey Trot a Success!




Thank you to everyone who joined us Thanksgiving morning for our fifth turkey trot.  It was a huge success and we are so grateful for your support.

TT2013DSC_7034.jpg

Each year this event grows, and that is so encouraging.  We take this growth to mean that our trotters are telling their friends and family about what a fun morning it is, and how seeing Steven and knowing their entry fee is going directly to his care is inspiring.  The event is growing mostly due to this sort of word of mouth, and is one of the key reasons why our Trotters are the happiest, most caring group of people around.

We know there are other turkey trots in the area to attend, but our trotters chose our 'no frills, just fun, for Steven' turkey trot.

TT2013DSC_7686.jpgTT2013DSC_7221.jpg
 
Despite the bitter temperatures; despite the wind; despite the lack of an official timing system; despite the free swag that has become commonplace among races; despite the fact that the organizer is horrible at using a megaphone... despite these things and more, our trotters show up year after year with a smile and support our event FOR STEVEN.  And for this, we are forever thankful.

The Turkey Queen this year was Katy Hatch with a time of 20:15.  The Turkey King this year was Slava Kolpakov with a time of 18:19.  Congratulations to both of you!

TT2013DSC_7686.jpg

Check back to see the completed photos of the race, and feel free to post photos you took at the Trot on our Facebook event page: https://www.facebook.com/stridesforstroke.  We'd love to see them!

We hope to see you next year!  Until then, Trot and Gobble, and many, many thanks!

-Kelly (Steven's sister) and all of Steven's family



Monkey takes on Ragdoll, Ragdoll wins.

At the end of September Steven was coming up our stairs. Our Ragdoll Salem was laying on the 2nd stair from the landing and when Steven went to step over him he lost his balance and fell down the stairs backwards.   Luckily I was home and heard the commotion and went running to see what had happened. I could tell immediatley that something was broken. Steven was able to right himself around from his fall position and we got him up.  Off to the ER we went. Using his frequent flyer ER pass , he was brought right into triage and then off to a room in the ER.  Xrays confirmed that he did break his shoulder (humerous) bone, along with alot of bruising due to being on the blood thinner coumadin.   He was given a sling and pain meds. Due to the position of the break they could not cast it , so he would have to wear a sling and keep it immobilized. The break was on his stroke affected arm so this made it very difficult.  Steven has very little use of this arm and not much feeling either.   Keeping the arm immobilized was not an easy or painless task.  Steven was in severe pain for the first few weeks and had to resort back to walking with a cane and having someone else take care of all his needs. 

The following week Steven was lucky to be seen by a fantastic orthopedic surgeon, Dr. Michael Brunelli.  Dr. Brunelli confirmed the ER's diagnosis and treatment plan.   

At his three week appointment with Dr. Brunelli the xrays confirmed the shoulder was healing and Steven was cleared to start OT. First just the hand, wrist and elbow and as the shoulder continues to heal slowly working that in.

Although we love Spaulding, we decided to try the brand new Milford Regional Medical Center Rehabilitaton and Sports Medicine center.  This faciltiy is 5 minutes from our house and will allow us the flexibility to get Steven the appointments he needs.  He was assinged a fantastic OT and they are working well together.  She started using ultra sound to break up the severe tone in his arm and it seems to be working.   Steven is working hard to get back to where he was and then focus on moving forward to gain more use of his arm.

Steven started back at Peoplefit this past Monday, working only his lower body until the shoulder is healed.   His PT's Amanda and Kelli, really missed him. They sent him a gorgeous Edible Arrangement when he first broke his shoulder.   See picture below:

steven with arm brace.JPG

Steven has some exciting things happening right now.  He has been approved to get the new MYOPRO   MYOPRO.com.  This is the newest version of his current device the myomo Mpower.   He will be going in for a casting of his own arm shortly and then they design the device specific to him.  Stay tuned for more updates as we go through this process. 

 

                            IT'S TURKEY TROT TIME

THE FIFTH ANNUAL STEVEN T. HILL STROKE FOUNDATION STRIDES FOR STROKE TURKEY TROT WILL BE THANKSGIVING MORNING  2013, STAY TUNED FOR DETAILS AND REGISTRATION

 

 

 

We Have Extra Foundation Gear, Get it Here!

 

IMG_2198.JPGIMG_2234.JPGIMG_2342.JPG

Tumblers are $10 each (These are from our recent golf tournament)  - double walled, 16oz, holds hot and cold beverages,  a must have!

Summer beach towels $30, these are super soft and will look great at the beach.

Duffle bag coolers $30, these are insulated on the inside, very roomy and are great for picnics and lunches. 

If you order any two items take $5 off.  (does not apply to a 2 tumbler order)

Please email us at sthstrokefoundation@gmail.com

 

The 4th Annual Steven T. Hill Strokes Fore Strokes Golf Tournament was a Huge Success!

We want to thank everyone who participated in this wonderful event, the golfers, volunteers, the golf course and most of all Steven himself.  Without all of you Steven would not be where he is today. 

Start with a beautiful sunny day, 72 Golfers and a great cause and you have a recipe for sucess. The day was hot , in the 90's but that didn't stop the golfers from enjoying the beautiful Butterbrook Golf Course in Westford MA. 

Team Hayes took home the first place title with a score of 59, while team Dolci the second place and team Ronin the third. 

Brandon Kozi won the prize for longest drive and Santino Dipaola won the closest to the pin prize. Yano Amara won the putt off and took home an ipad. 

In the eyes of the Foundation everyone was a winner!!

The tournament was followed by a luncheon catered by Newbridge Cafe out of Chelsea MA.

The raffles were abundant and everyone was thrilled with their wins. 

See below for a few pictures:  and click here for a link to the full album.

ButterBrook2013_DSC_48282.jpg

Steven giving his Thanks!

ButterBrook2013_DSC_4806crop2.jpg

Tanya, Joe, Crystal and Steven

ButterBrook2013_DSC_48722.jpg

Lynda Van House, Marilyn Hill, Jake Van House and Tanya

 

 

 


 

Steven and Tanya take a vacation and visit Aventura 4 years post stroke.

Steven and I took a much needed vacation at the end of May and went to Fort Lauderdale. Steven enjoyed a week of therapy free relaxation and a week of work free relaxation for myself.  Below is Steven looking casual and happy on our balcony outside our room and as we wait for our dinner reservation at Chima Brazillian Steak House.

IMG_2102.JPGIMG_2164.JPG


While in the area, we ventured south a mere 10 miles and visited Steven's saviors at Aventura Hospital and Medical Center.  They were all very happy to see him.  We toured the ICU where Steven was and the new 10th floor they just opened up.   We ended the day visiting with Dr. Cross his neurologist and then had a wonderful dinner with Manon Lepage and her daughter Meghan.   Manon was our angel when we were there in 2009.  She cooked us a homemade dinner and made sure we were getting everthing we needed.   The following night we had dinner with Kathy Taylor and her husband.  Kathy is the head nurse in the ICU.  This was wonderful to spend one on one time and just enjoy the conversation and good times.

See pictures below of our Aventura Family:

:IMG_2138.JPGIMG_2139.JPG

 Kathy Taylor, Steven and Manon              Kathy Taylor , Steven and I

 

IMG_2141.JPGIMG_2142.JPG

Steven and PT Robert                   Steven and Margaret

 

IMG_2143.JPG

Steven and Dr. Jon Cross (neurologist)

4th Annual Steven T. Hill Strokes Fore Stroke Golf Tournament update:

We still have plenty of spots available for golfers.  Come join us Tuesday June 25th for a fun filled day of golfing at the beautiful Butterbrook Golf Course in Westford MA.  We have lots of great raffles and contests.  Get a hole in one and win a brand new car. Breakfast and lunch included. See Events tab registration information or click here.

Our Monkey attends a Bruins game March 9th against the Philadelphia Flyers

 

It was an exciting Saturday as Steven and I attended our first Bruins game together since his stroke almost 4 years ago.  Putting on our jerseys,  me Ference and him  Marchand (that scrappy one) as Steven calls him, we headed out.   We were both excited and a little nervous, big crowds are still a bit scary for Steven.   Everything worked out great, we took the handicapped elevators and were at our seats in no time.  The excitement in Steven's eyes and the smile on his face just made me melt.    Blades the mascot was making his rounds and we got our photos taken with him.

IMG_1920.JPG

We then looked up and were on the jumbotron. Steven loved it! The game started and the Bruins came through with a win with 3 goals.  Steven got to do his favorite part of the game saying the "Whooo" at the end of each goal. 

I absolutely love the Bruins, but to attend a game with Steven was an event of a lifetime.  We hope to do more of this type of thing in the future as he continutes to get better and more confident in social situations. 

 

IMG_1912.JPG

 

At the 2012 Turkey Trot we met the Lexington Legoheads and found out they were basing their current project on Stroke.  They met Steven and were fascinated by him and how much he had acccoplished. 

In December of 2012, we had the honor of hosting the Lexington Legoheads at Steven's parents in Lexington.  Since the Legoheads had based their project on strokes, they were enlightened by all the information Steven could tell them. They did their presentation and then had lots of questions for Steven. Stefanie Conaway from Myomo attended as well and helped to explain the Myomo M-power device that Steven owns to these young brilliant students.  The meeting was enlightening for both sides and we are looking forward to meeting up with them again in the future. 


Please click HERE to see the pictures 


We are in the beginning planning stages for the 2013 Steven T. Hill Stroke Foundation Strokes Fore Stroke Golf event.  Please stay tuned for registration information to be posted soon!!!

 

 

Happy New Year Everyone!!

The Steven T. Hill Stroke Foundation wants to wish everyone a Happy , Healthy New Year. 2012 was a great year for the Foundation and for Steven personally. We have accomplished so much with your help.  

Steven is going to start off the New Year with some Occupational Therapy Sessions to enhance the botox that he got in his arm in early December.  Arm and Hand rehabilitation is going to become a big priority in 2013.

Steven is going to be taking a break from his traditional speech therapy and he is going to be attending a weekly Aphasia group at Boston University starting at the end of January.

http://www.bu.edu/aphasiacenter/programs/weekly-groups/

Stay tuned for announcements on 2013 events. 

IMG_1657.JPG

27 NOVEMBER 2012

TURKEY TROT #4: A HUGE SUCCESS!

 

A big thank you to all of the participants at our 4th Annual 'Strides For Stroke' 5K run & 3K walk on Thanksgiving morning!

TT2012_DSC3827nxps.jpg

The winners this year were a father-daughter team who posted times in the 17-18 minute range!  Very impressive and incredibly sweet.  They wore our Turkey King and Queen sashes proudly.  Next year I will have to have a "Turkey Princess" sash. 

TT2012_DSC3767nxps.jpg

We had 206 registered runners and walkers this year!  This is the fourth consecutive year that we have seen a steady increase, which makes us so thankful and excited!

I especially want to take the time to thank everyone for spreading the word about our Turkey Trot.  I take great pride in this being a home-grown event with no frills.  I love that it's in Steven's childhood backyard in Lexington.  I love that the routes were "measured" by our Dad (and that he wears a turkey suit while photographing the event).  I love that the route signs are made by me and my 7-year-old using construction paper and markers.  I love that the timer used cost less than $10.00 and I often hear Krista saying "ish" when giving runners their times (as in, "21:35-ish").  The biggest upgrade this year was our Port-A-Potty (generously donated by Steven's aunt and uncle).  Woohoo!  All of these details make our Turkey Trot uniquely unofficial, which allows the emphasis to be on the fun and the togetherness -- which is at the core of Thanksgiving day and coincides just perfectly with our event.

Thank you to the volunteers who year-after-year return to make this event successful.  I could not do it without them!

You can see more pictures here: https://picasaweb.google.com/jbqwik/TurkeyTrot2012?feat=email   :)

MUCH love and deep thanks,

Kelly




27 October 2012

TURKEY TROT REGISTRATION IS OPEN!

 

Please join us for our 4th Annual 'Strides For Stroke' Turkey Trot!

This event begins and ends in the backyard of Steven's childhood home, and is a fun morning for family and friends to be together.  There is a 5K running loop and a 3K walking loop.  Last year we had an unprecedented number of participants and we are hoping for a similar turnout this year.

Check out the Events page for further details and to register!

Here are last year's top Turkey King and Turkey Queen: Frank Kjavasgaard with a time of 18:40, and Julia Bond with a time of 21:51.

KingQueen2.jpg

KingQueen.jpg

 

 

 

 

September 9, 2012 ( An update from Tanya)

Labor Day has come and gone and made us realize what a busy summer we have had.  To celebrate the long weekend Steven and I took a trip to Endicott, NY to visit my sister.  We have not been out there since 2010.  We had a great weekend, BBQing, relaxing and just catching up.


Steven continues to be busy with his weekly therapies at Spaulding and his home therapies.  He continues with speech two times a week at Spaulding Boston.   He just got another round of botox in his right arm to help with the spasticity and we are ramping up the stretching and exercises.  He continues to use his M-Power device from Myomo (www.myomo.com) and his H200 from Bioness (www.bioness.com).  Just a reminder of the many devices that Steven is able to add to his therapy regiment due to the generousness of you , the foundation supporters.

We are “fine tuning” the Steven machine!  He has been working with Ryan and Amanda, both exercise physiologists, at People Fit, Woburn (www.peoplefit.net).  They are helping Steven concentrate on working his right side, as well as tune up his body, and lose some weight!  He works up quite a sweat, and seems to like it so far.    Below see picture of Steven with Ryan.

 

steven and ryan edit.jpg

 


This past weekend on Saturday September 8th, Steven and I attended the 2012 Thrombosis Summit in Boston headed up by one of Steven’s Dr’s.  Dr. Gregory Piazza MD, MS.   Dr. Piazza did a presentation on the type of rare stroke that Steven had, a Cerebral Venous Thrombosis.   Although we have been vastly educated in this type of stroke, we did learn a few interesting facts that fit Steven’s case.    Although seizure is not one of the classic signs of a stroke, for a Cerebral Venous stroke it is a sign.    This type of stroke happens more frequently in people age 20-40 , people with a clotting disorder such as protein C ( this is what Steven has) and in women.   Surprisingly the last risk factor listed makes the stroke that Steven had even more rare due to the fact he is a man.   Dr. Piazza  was generous enough to include a slide featuring the Steven T. Hill Stroke Foundation.  He gave a brief description of the foundation and introduced Steven and had him stand up.  Steven , the ham that he is , gave a fist pump and got a round of applause from the auditorium.  Thank you Dr. Piazza .   For more information on the North American Thrombosis Forum please visit (www.NATFONLINE.org).

 

 

 

 

 

 

 

 

August 6, 2012

Happy 37th Birthday to our Amazing Steven!

Steven celebrated his Birthday this past Saturday by going out to dinner with me (Tanya) and his parents to The Alamo, a local Mexican restaurant.  We ended the meal by singing Happy Birthday and having some chocolate cake. 

See picture below with sombreo and cake.

IMG_1166.JPG

 

July 1, 2012

A Vacation, A New Kitten, A Soggy but successful Golf Tournament and A Visit from Some Angels.

Steven and I took a much needed vacation to Fort Myers Florida at the end of May. We left all therapy devices, tools etc at home and enjoyed a week of doing nothing but relaxing. It was our first official vacation since the stroke and it was the first time we both have felt normal in a really long time.

IMG_7366 - Copy - Copy.JPG


Upon returning home, we adopted another ragdoll who we named Bruin.  He completes our Boston themed cats, Salem, Logan and Bruin.  Bruin has since had some medical issues, but is on the mend and Steven enjoys his kitten antics.

June 25th was our 3rd Annual Steven T. Hill Strokes Fore Stroke Golf Tournament held at Butterbrook Golf Club in Westford MA.  Even though the weather forecast was ominous , we persevered.  About an hour and ½ into the tournament ,the skies opened up and gifted us with a two and ½ hour thunderstorm/rain delay.   The Golfers enjoyed a few drinks and some social conversation as we waited out the storm.  The Golfers were sure troopers because just after they returned to the course, the skies drenched us again with a down pour.  Not to be deterred, everyone finished the course and were 100% dried out by the time they were done.

Everyone gathered in the event tent and enjoyed a meal catered by The NewBridge Café in Chelsea, MA. ww.Newbridgecafe.com.  First, Second and Third Prizes as well as longest drive and closest to the pin were given out.   No one got a hole in one so until next year the Jeep goes back to the dealership.  After the numerous raffles items were drawn we held the final event of the day, (the putt off ).   Click here to see pictures from the event 

DSCN0451nx.jpg

 

To add to our excitement of the day, Angel Medflight from Scottsdale Arizona came to film Steven as one of their success stories. www.angelmedflight.com  Angel Medflight was the air ambulance service that came to our rescue and flew us back from Florida to Boston in 2009.  They are launching a marketing campaign to highlight some of their patients success stories around the world.   They attended the golf tournament and the very next day came to Bellingham and did an interview with us and we told Steven’s story.  It was great meeting Jenna, the marketing representative and Genaro, the camera man. We want to thank them again for bringing us back from Florida and including us as part of their success stories.  See photo below of us with Jenna.   (Stay tuned for final video to be launched in about a month).

photo 2.JPG

 

The 3rd Annual Steven T. Hill Strokes Fore Stroke Golf Outing was a huge Success!

Through rain and more rain golfers persevered.

Thank You to all golfers and volunteers for making this event a success!

Here's a few pictures and check back soon for more.

golf 1.jpg

golf 2.jpg

April Update from The Parents: Leg Work, People Fit, and Tanya Takes a Trip (to Milford Hospital)

 

 

Steven good-naturedly accuses us of deliberately annoying him with constant new routines.  He has a point: The latest focus is on Steven’s leg, with the goal of improving his gait.  Our Bioness contact, Stacy, is helping us trial-test the newly developed Ness L300 Plus.  The thigh attached ‘Plus’ device works in coordination with the calf muscle-attached Bioness L300 Foot Drop System to stimulate a neuronal signal.  The idea is for the brain to become familiar with, and, to memorize a fluid, natural-looking step.  Steven is the first in the area to use this device.

Along the ‘annoying’ line, we decided it was time to have Steven re-evaluated at our favorite exercise facility, People Fit www.peoplefit.net .  Co-owner Pat Agostino, worked to map new routines designed to keep things interesting while increasing core mobility. 

 

 

Apparently, things were all going so smoothly we were overdue for some calamity, and Tanya was the target:  She contracted Salmonella, sending her to Milford Hospital for 6 days, then another 6 days at home.  During this time, Steven stayed with us, and actually had a virus himself.  All is good now, and everyone is back to full strength as we progress towards the Next Big Thing: The golf event!  We hope to see you all there.

An Update from Tanya:

Steven and his parents attended an event at Faulkner Hospital on April 25th.  They had the great pleasure of meeting Julia Fox Garrison, author of   Don't Leave Me This Way , or When I Get Back on My Feet You'll Be Sorry. ( This is a much recommended read)  Julia is also an amazing stroke survivor.  I had the pleasure of reading her book quite awhile ago when Steven's Dr. Vora recommended it to me.  Since then Julia and I have touched base via email and facebook.   Steven and his parents said her talk was phenominal and how much they could relate to what she was saying.

Julia, after her talk pulled Steven aside and gave him one of her special Angel coins.  She gives them out to kindred spirits so they have something they can hold onto in a time of need.  See picture below.

I unfortunately was unable to attend due to my illness mentioned above, but Julia and I feel there will be a meeting with all of us in the near future.

 

 

JFG_Faulkner_04.2012_DSC1236b1nxps.jpg

 

 

The Next Big Thing:

 

 

 

sthGolfBall3_3781-lgo.jpg

 

 

March 2012 Update

From Tanya:

Happy New Year

2012 has been a busy one so far.  Steven is continuing with his speech therapy and has joined an aphasia group at Spaulding Boston (see photo below). The group meets twice a week for 6 weeks and has 5 young stroke survivors with similar speech impairments as Steven.   He is really enjoying interacting with others.

Along the same lines, we have been going to a weekly potluck dinner night at my friend Rachael’s house.  Steven is really does really well in the conversations and jokes around with everyone.  He is getting better with bigger groups of people.

Steven and I have been working with Myomo (myomo.com) the makers of the Mpower device that was featured in the last update) and are going to hopefully being doing his success story for a national marketing campaign.  With his cute smile and good looks who wouldn’t want him as the face of their product.

He has been helping my friends and many family members fix their computer issues.  His computer skills are still sharp and fully intact, it’s just the follow through that is difficult for him.  Mostly due to not having the use of his right hand.   Of course his services come at a cost and he has been taking payment in the form of food.  He has gotten my friend Rachel’s famous lasagna and my friend Gerri’s bacon meatloaf.   He couldn’t be happier.

Group1.jpg

On January 24th Steven had to have surgery on his toe.  He has been having problems with his toes since June of 2011.   Due to his foot drop and the way his gait is, his toes on his stroke foot hit the top of his sneaker and cause ingrown toenails.  We made the decision to have the toenail removed to prohibit this.  Steven had to come off his Coumadin for this but did well and he is now onto a full recovery.

Get out your golf clubs and polish them up, the 2012 Strokes for Stroke golf tournament has been booked for June 2012.  Details and registration will be updated on the site shortly.   We hope to have a great turnout this year and we may have a few surprises in store.  Stay tuned...

 

From Tanya's company, Gordon Brothers Group:

Gordon Brothers Group, LLC  founded by Phil Frieze gives out the Phil Frieze Award every year to someone who has distinguished him/herself in an exceptional way, either through community service, inspirational leadership or by performing an extraordinary deed or act.   This year the award was presented for a special reason.  Tanya was given the award for  Courage in the face of Adversity.

Award2.jpg

In May of 2009, while Tanya and her husband Steven were on vacation in Jamaica , Steven  suffered a massive life threatening stroke.  Tanya since then has learned everything she can to get Steven the best of care and resources out there for recovery  all the while giving 100% to her job and other responsibilities.

Along with her sister-in law Kelly Chadwick, Tanya has been a huge part of the Steven T. Hill Stroke Foundation.  This foundation raises money through numerous events yearly ( a turkey trot and golf tournament ) as well as putting out a family cookbook and a stroke foundation bracelet.  Tanya along with Steven also educates on strokes happening in young adults.   Currently Tanya is writing a book documenting Steven’s journey through her eyes.

 Award1.jpg

Tanya was surprised by Steven , her mother and father in law at the yearly holiday party at Boston’s Top of the Hub.  She was also awarded with a $1,000 donation to the foundation and a tiffany bracelet.

Congratulations, Tanya!

 

 

21 DECEMBER 2011

SEASON'S GREETINGS!

Photos from our Turkey Trot can be viewed here: https://plus.google.com/photos/109848180992927221057/albums/5687854637095583569?authkey=COqc1crhvNqG-AE
Thank you, Dad, for all your hard work on these -- I know it wasn't easy while wearing a turkey suit! 

Start.jpg

The following update is from Steven's dad:

Through our continued efforts, together with the strong support of family and friends, Steven’s biggest disability -his speech- has significantly improved. So much so that he may now initiate conversation without prompting. Yes!

For stroke victims, there is only going forward, never back. Thus, with his speech coming along, we feel confident about tackling his second biggest challenge: His non-functional right arm and hand.

myomophotoshoot_DSC9358.jpg

Beginning last year we started discussion with a young Boston technology company, Myomo. The device they make is a unique mix of engineering technology and think-forward entrepreneurism. Instead of using muscle stimulation, the Myomo mPower 1000 employs a closed-loop, muscle neuronal-feedback mechanism to assist and guide correct motor function. In this way, through accurate, repetitive motions, the brain has been found to have the capability of remapping damaged neuronal pathways.

Although we all agree Steven’s arm functioning will be a big challenge, initial results are encouraging enough that Myomo executives feel he will benefit. Working hand-in-hand with Myomo staff, insurance providers, and the leverage of the Foundation, we are greatly pleased to announce we are now proud owners of, and, fully invested in the technology of the Myomo mPower 1000.

Check the photo page:   https://plus.google.com/photos/109848180992927221057/albums?banner=pwa#photos/109848180992927221057/albums/5686007620303265761   to get a look and feel of our newest stroke-buster tool!


25 NOVEMBER 2011

 

TURKEY TROT A SUCCESS!

 Thank you to all of our participants.  Our 3rd Annual Turkey Trot was a success beyond our belief!  Nearly 200 runners and walkers joined us for a fun morning in beautiful Fall weather.  We are so appreciative for all of the support from our local community!

Pictures will be posted soon, so check back often.  Congratulations to our first place finishers, AKA the Turkey King and Turkey Queen: Frank Kjavasgaard with a time of 18:40 and Julia Bond with a time of 21:51.

Happy Thanksgiving, everyone!

23 SEPTEMBER 2011

 

WELCOME, AUTUMN!


StevenAug2011-11115.jpg

Fall has officially begun and I am busy planning the 3rd Annual 'Strides for Stroke' Turkey Trot!  I hope you will join us on Thanksgiving morning for a 5k run/ 3k walk, held in Lexington, MA, to benefit the Foundation.  Registration will be online shortly, so be sure to check back often!

Below is an update from our dad, Steve Hill:

 

Steven’s month-long schooling at the UMAP program must have left an impression with the staff; They give him some cool Facebook press and a link to his Foundation web page: 

http://www.facebook.com/#!/aphasiahelp

Families of stroke survivors can easily become overwhelmed dealing with multiple disabilities, and, the confusion finding therapies that are best for their situation. (Here, I shamelessly point to Steven's Story and Foundation articles for examples of this along with some advice.)

Early in Stevens rehab, Tanya read about a program run by the University Of Michigan, called UMAP: http://aphasiahelp.com/.  The tuition for the program is commensurate with the specialized therapy focus and highly skilled staff.

Steven was becoming depressed over his communication difficulties so a family meeting was called, a decision was made; We took our faith and fate to UMAP. 
In the end, the program far exceeded our expectations! We can’t say enough about the expert, caring staff, the wonderful attendees and the final results. Steven now has skills to practice and build upon.

UPDATE: Despite Monday’s scary seizure episode (he fell, hitting his head on our thick glass coffee table) , Steven is making a strong comeback: Today he received a clean bill of health from Harvard Medical neurologist, Dr. Pilgrim. Yea! Dr. Pilgrim - a superb neurologist and way-cool guy - assuaged our concerns, explaining how seizures can be both good and bad. In Stevens case, he is confident they are becoming manageable. 

We have noticed each seizure episode seems to be something of a brain 'reboot', almost like an ending of one chapter, the beginning of another. So, as we pick ourselves up, feelings of helplessness become feelings of hopefulness. It's time to move-on with the adventure that Steven's rehabilitation has become. 




8 AUGUST 2011

 

 

 

 

SUMMER IN FULL SWING -- HAPPY BIRTHDAY STEVEN (#36)!

Steven and Tanya came up to Amesbury to visit us a couple weekends ago.  They even took us out to lunch as a treat for my birthday (which was July 29th.)  We had a great time.  I really noticed a marked difference in Steven's speech.  It is clear the UMAP program worked wonders.  He seemed more confident, too.  Good job, Steven!  

Jessie and Danny loved hanging out with their aunt and uncle.  I think Steven was ready to leave after several hours with a 6-year-old, 2-year-old and 3-month-old -- and a rambunctious black lab puppy.  Haha.  Needless to say, it's not quiet around the Chadwick household.  Ever.  Nontheless it was great to see them and we all had fun!

Below is Tanya's latest update.  Happy summer, everyone!  -Kelly
 

Me and Steven 8-11.JPG

Picture above is of Kelly (with baby Natalie - 3 months - in front carrier) and Steven in Newburyport.

Steven sure has been busy since returning from Michigan July 1st.     We hosted a small 4th July party with few local friends and then enjoyed the Bellingham fireworks with my Mom and Dad.  Kitties returned all safe and sound, although we did get the cold shoulder treatment for a bit.


He’s back in speech therapy 3 times a week with Danielle at Spaulding Framingham.  She was amazed at the progress he made in Michigan. She plans on continuing with what he learned out there and assigns him lots of homework.    Funny enough Steven now seems to enjoy the challenges of the homework.  He is doing deduction puzzles (none of us can actually do them), reading sentences out loud from a computer program (ORLA) and keeping a daily journal.   We are also trying to get Steven into the Spaulding community program.  He would go once a week into Boston and with other patients go on outings to use their social, communication and cognitive skills.   This would be real life situation that he would have to deal with.


Steven is also back to the Peoplefit gym at least twice a week.  He has added additional machines to his workout as well as longer times and more resistance.   Aqua therapy once a week has also been added back in to his schedule (weather permitting).


Our goal has been to keep him as busy as he was at UMAP.  We have been taking Saturday day trips to visit friends and family.  This accomplishes two goals, it give Steven the ability to use his communication/social skills and a chance to visit people we haven’t seen in a while.    First trip we took was to see Kelly and family in Amesbury.  We had a wonderful time.   From there, since it was so close, we went and visited Steven’s roommate from Spaulding, Don.  We have not seen Don in over a year.  He noticed great changes in Steven. He is also recovering nicely.   It was really good to have time to sit and talk to them.  

IMG_6851.JPG

Photo above is of Steven and Don.

Last Weekend we went and visited our friend’s the Achenbach’s in Rockland.  We had a nice BBQ and swam in the pool.   Steven was asking questions and really participating in all the conversation.  It really is a miraculous transformation from the way he was just a few short months ago.


Steven’s 36th Birthday was this past weekend and it was a celebration of life and happiness.   We visited our friend Amy, a fellow stroke survivor, at her home in Westerly, RI.

DSC_1698.JPG

Photo above is of Steven and Amy.

Another exciting opportunity for Steven is starting on Aug 13.  He along with fellow stroke survivor Kurt Anderson will be doing a trial with the robotic arm MYOMO.  www.myomo.com.   We will all start our training at the local Cambridge headquarters on that date.  Steven and Kurt along with me, Kurt’s wife, Steven’s parents and Kurt’s aide will be trained.    They will also incorporate a new item that MYOMO has come out with.  It’s right up Steven’s alley, online games!   They will use the robotic arm to play these games.  After this session we will have 2 weeks to get ourselves familiar with the arm and then have another training session on Aug 27th.   Steven and Kurt will then have 3 months to see if this is a product that they would like to use long term.   Check out the site, there’s a familiar face that’s on here. http://www.myomo.com/myomo-solutions-perl-technique-evidence-based-treatment.asp


On August 20th we will be going on an exciting excursion.  We will be taking Cape Air’s 9 seater prop plane from Boston to my hometown Ogdensburg, NY.   We have not been up there since summer of 2008.  My brother is turning 40 and my family is hosting a surprise party for him and Steven has agreed to go.   This will be a great surprise for him.


As you can tell from the update, things are fast paced and lots of exciting opportunities are happening or are about to happen.  We are continuing to get Steven the best therapy and treatments that are possible so that hopefully soon, he might be able to venture out on his own a little. 


Stay tuned ….


Tanya



29 JUNE 2011

 

 

Update below from Tanya; final week in the Michigan Aphasia Program

 

We have just started week 5 of the UMAP program for Aphasia.  The term Aphasia is used frequently in the stroke world, but to the average person this is a foreign term.  Aphasia has many facets and many degrees of severity.  It not only includes losing the ability to speak, but also to understand and recognize written and spoken words, along with being able to read and write numbers and letters.  The best way to explain it would be for the average American to function in a foreign country with no use of the English language at all.  For more understanding of Aphasia you can visit the following link: http://en.wikipedia.org/wiki/Aphasia.  Steven's definition is "my brain knows what I want to say, but my mouth will not say it.”  Steven will be able to make great improvements with programs like UMAP and continued speech therapy at Spaulding, but there is no miracle cure for Aphasia and he will struggle with his language and cognitive thinking for the rest of his life.  (Picture below shows Steven working with his main therapist, Heather.)

IMG_6753.JPG

Steven has come a long way in just a few short weeks. They are finishing up this week with post-testing and will compare it all to the beginning testing.  I sit in on these sessions and I can already tell he has made a lot of progress.  For example:  pre-program, given a card with a picture on it and asked to describe it to someone so that they may guess what it was, Steven did not even know where to begin.  He could not do anything.  Currently, he can look at the same card and tell you a group it’s in, what color it is, what shape it is and sometimes what it is used for.  I will not go into great detail, but I feel he has made progress in almost all his deficit areas.  We have learned the tools and tips that we can take with us to continue to work with Steven on his speech and cognitive learning.

  (Picture below shows Steven and Tanya with the Hoffman's: Hunter, Becky and Andrew, sporting their STHSF monkey t-shirts of course!)

IMG_6735.JPG

The other thing we will take away with us from this experience are the experiences of others dealing with varying degrees of this devastating side effect of a stroke or traumatic brain injury.  We have bonded in ways we could never have imagined and have made some lifelong friends. We have learned from them and they have learned from us.  The sharing of information, treatments and stories makes you feel you are not alone.  (Picture below shows Steven playing the harmonica in a music class.)

IMG_6749.JPG

One last thought is that this foundation has made a great impact.  Everyone at the program here in Michigan and all the therapists and management could not believe what we (you) have accomplished for Steven, and what we plan to accomplish in the future.  You have given Steven his life back.  YOU: his friends, family and supporters!   Thank you SO much from the bottom of our hearts.  To see him thrive in this environment and know that he would not be here if not for the funding from the foundation, really makes me appreciate all you have done for us.

With love and the greatest appreciation,

 

Tanya


15 June 2011

 

Update below from Tanya; week 2 in Michigan Aphasia Program

 

A New Friend and a Compelling Story


 

Most of you probably think that our Steven would be the youngest person attending the Aphasia program in Michigan.  Well meet Hunter Hoffman.  Hunter suffered a stroke in August of 2009, at the very young age of 14 years old.   An aspiring football star, living in Evansville, Indiana, Hunter suffered a stroke at an away football game in Henderson, Kentucky.  

Once again, just like Steven, stroke never entered the minds of family or doctors as they tried to diagnose Hunter's collapse after the football game at a local Kentucky Hospital.   Transferred to his hometown hospital he then had an arteriogram performed which determined that Hunter had a clot in his brain.  

They tried to use a Merci Retrieval device
http://www.nortonhealthcare.com/the-merci-retrieval-system to remove the clot, but unfortunately it broke off.  Not being able to retrieve the clot and having this device permanently left in Hunter's brain only made his situation worse.   Hunter was once again transferred to Riley Children’s Hospital and was there for 2 1/2 weeks until he was transferred to a live-in rehab for 4 weeks.   

Hunter is now 16 years old and is attending the Aphasia program alongside Steven and 3 others. He has similar speech deficits like Steven and has no use of his right hand or arm.  Hunter is back in school; he attends special classes that can help with his speech impairments and has been made manager of his football team. He attends all the home and away games and still puts in his 2 cents.  He still aspires to finish high school and attend college.   

We have struck up a kindred friendship with him and his family, as we have both experienced so many similar things.  Having young people in our lives suffer strokes is so hard to believe, but the growing statistics show that it’s more and more common in the young now than in the elderly.  We know why Steven had his stroke -- his was due to his Protein C deficiency clotting disorder -- but they never officially determined why Hunter had his stroke other than most likely from a football head injury.   It is so important to learn the signs of stroke and not rule it out at any age.  (Photo of Steven with Hunter in art class.)

Michigan 6-11-11.JPG

 

After a week and a half here in Michigan Steven is still going strong.  He is applying himself 110% and I am seeing improvements every day.  He is getting stronger too, only short 20 minute cat naps during the day.  Although today (Saturday) he slept all day only getting up to eat.   I let him recharge.  The picture of the two of us was taken at a yummy crab restaurant we found!

Michigan 6-11-11-2.JPG

 

Last weekend we went to the Henry Ford Museum, with another friend from the Aphasia program, Lee Van Boven and his wife Kathi.  What a great time!   It's great for Steven to be around others like him; they work together to get better at their speech.  (Photo of Steven with Lee at the Ford Museum.)


Michigan 6-11-11-3.JPG





7 JUNE 2011

COOKBOOK FOR SALE!


"Sweets & Treats," the official Steven T. Hill Stroke Foundation cookbook, is now on sale!  For those of you unfamiliar with this project, allow me to share with you how it all came to be...

In an effort to think of a new fundraiser, the idea of creating a cookbook began to germinate last summer, 2010.  Little did I know that it would take me nearly one full year to complete it!  In an effort to narrow down the scope, I decided to make it a dessert-only cookbook, and with the help of my mom and Tanya, we excitedly asked some of Steven's closest family and friends if they would please, please, please contribute one of their favorite 'sweet treats.'   To make it special and unique, we asked each contributer to also submit a photo of themselves.  Thank you so much to the 40+ individuals who took the time to email me a recipe and a photo; I know for some of you, the photo submission took a little arm twisting, and I am so appreciative that you indulged me in this!  And thank you, Tanya and Mom, for helping me coordinate the early stages of the gathering process.  I couldn't have done it without you!

With all the recipes and photos of the contributors gathered, I was well on my way to creating a cookbook... or so I thought.  At some point I decided that each sweet treat MUST have it's own photo also.  After all, this is a cookbook; don't we want to see how these yummy treats actually look when baked?!  I must say that this was a few weeks before finding out I was pregnant with our third child.  If I had known what was up and coming in my personal life, I'm not sure I would have been so ambitious!  Nonetheless, onward the project went.

I enlisted my mother as co-baker and divided up the recipes 50/50.  (Between you and me, I gave her all the ones that seemed more difficult to bake.)  And off we went - my mom and I - she in her kitchen in Lexington with my Dad as photographer and taste tester, and me in my kitchen an hour away in Amesbury trying to keep my children's fingers out of the desserts before I photographed them.  We baked our way through nearly 50 yummy recipes, making two or three a day.  Our neighbors were well-fed.  All of this, just so that we could get a photograph of each dessert to include in the book.  If you have seen the recent movie, "Julie & Julia" you have a sense as to how it all went.  To my mom: thank you so, so much for going on this baking journey with me.  Have either of us baked anything since?!  I think we filled our yearly quota for sure.  And to my dad: your pictures have always been amazing.  I so much appreciate how you took the time to perfectly craft the photographs for this book.  You are published now!

At last, I thought with a relieved sigh, the baking was done, the photographs were all taken and surely I was nearly finished with this cookbook.  HA!  I quickly realized I had no clue how to actually make a book!  Websites that promised an easily-completed project were either too expensive or not capable of constructing a cookbook with as many full-color photographs as I hoped to use.  I was on my own... or was I?!  With the expert help of my husband, Dan, and my best friend since childhood, Lori LoTurco, we created a beautiful theme for the book and carefully crafted an equally beautiful design and layout for each of the (119) pages.  I can't thank these two individuals enough.  They know me inside and out - and knew how to tell me I was off my rocker for designing this thing or that thing, were amazing at giving me much-needed feedback and further ideas, and knew when I had hit the nail right on the head.  Lori and Dan: the finished project is something I am proud of, and you both had a big hand in making it all that it is.  Thank you, thank you, thank you.

Through this process I have learned many things.  (Not to make a cookbook again - no, just kidding!)  One of them is how special recipes are; especially recipes that are passed down from one generation to the next.  It was so fun learning what my relatives love to bake!  I will cherish this cookbook forever, and I hope you will too!

With love and happy baking,

Kelly

CLICK HERE to order one for yourself and take a peek inside the book!

 

 


 

1 JUNE 2011

 

MICHIGAN BOUND!

 

As most of you know, Steven and Tanya are out in Michigan for the month of June, participating in a wonderful, intense speech therapy program.  Here is the first update from them as they get settled in and start Steven’s rigorous program:

 

The trip out was uneventful.  Five bags of checked luggage and 2 carry-ons - we made it.  It was a short flight to Detroit.  We got settled into our room at the Residence Marriott and just relaxed.  We did not do much the first few days due to my back.  After a trip to the ER yesterday it finally has let go and I am doing ok. Steven is a great nurse!! 

 

Yesterday was day one: we had orientation and met all the other students and staff.  There are four others attending, each with a different level of Aphasia.  Steven attended 2 individual therapies and 2 group therapies today.  They did some testing in the individual session and the group sessions were about travel and communication.  Steven did so much talking that he had to take a short 20 minute cat nap after lunch. They have day rooms with beds for this purpose. He ended the day with computer lab  (see picture.)  He did spelling and reading comprehension.
  

 image.jpg


We take a shuttle to and from the hotel that they provide.   Once a week we go out to dinner as a group and that will take place tonight.  The hotel shuttle will bring us to and from the restaurant.  This will be a nice break from the light meals we have been having provided by the hotel.  Steven is homesick for his baby Logan, but one of the other students staying here with his family brought his cat and has said we can get some kitty loving if we need it.  We have been Skype-ing with my parents who have our cats and it is funny to see their faces when they hear our voices.  

 

This program is going to be fantastic and only after one day I feel that this was the right decision.  We don't expect miracles but with the ambition Steven is showing, we may just get another one. 

Here is the website for the program if you are interested:   http://www.aphasiahelp.com/

Stay tuned.  MUCH more to come!

Steven and Tanya

 


 

3 MAY 2011

UPDATE FROM STEVEN'S PARENTS AND TANYA...

Steven is now going to a gym in Woburn, called People Fit.  It is owned by the Agostino family, who are physical therapists, and wonderful people.  They have Steven on a challenging program, and he is enjoying it.  It gets him exercising and also interacting socially. Check out their website: www.peoplefit.net .  He is staying overnight at our house a couple nights a week so he can get 2 work outs in.  It seems to be working great! 

Steven People Fit 5-11.jpg


Steven sure has been a busy boy , as you can see by the update from his parents above.  This has been great as Steven needs to increase his stamina so he will be able to endure the long days that therapy in Michigan is sure to bring.  We are gearing up for that endeavor as we speak. He will be taking the official aphasia testing with his current speech therapist Danielle , and the results will be sent to the therapists in Michigan so they can start to develop Steven's individual program.


As Steven's motor skills and actual speaking continue to get better, the more the cognitive deficits are present.   This is a good thing, now they can pin point exactly the therapy to tackle this. 

Danielle's assistant did some informal testing with him last week.  She gave him four pictures and asked him to name the four pictures and then identify the one that does not belong.  He named the pictures perfectly and identified the one that did not belong.  ( As task only 6 months ago that he could not even do at all) Then she asked him to explain why it didn't belong.  The ever ham Steven is looks at her with those blue eyes and smile and says "if I tell you I may have to kill you!".  So glad the humor that is so Steven is still present.


On March 25th Steven got another round of botox, he got the max dosage of 500 this time.  They put most of the extra in his wrist .  We have seen a great benefit from these botox injections.  Although they don't solve the spasticity problems 100% they do prevent him from getting worse or yet have permanent contraction.  He is using his right arm and hand more, but needs to continue to train himself to use it more and more.

 Dr Vora 5-11.jpg


Steven attended the Spaulding stroke therapy group on April 13th for the first time.  Kati and Kurt Anderson (Kurt is a fellow stroke survivor who lives in the next town over from us) picked him up at 1:30 and he went with them.   This is the first time Steven has done something entirely on his own without  the safety of us to help.  The group is for the survivors only, so he had to do his own talking and interacting.   He said he enjoyed it and did well.  They stopped on the 6th floor (the stroke floor) to visit.  Steven got to see many of his caretakers and his favorite aide Roberto.  Per Kati it was heartfelt moment.  Roberto played such a large role in Steven's recovery .  He will always be a hero to us. 


All these events and little things that Steven is now accomplishing are huge.  Looking back six months to a year ago , thinking back then he would never be ready for something  like this.  He amazes us all.  The more he gets back into the normal things of life and keeps busy with new activities and stimulus the more he thrives.  


I am in the throes of writing Steven's story as a book.  We have signed on a publisher and are working hard.   It's been quite difficult with the first few chapters as all those memories rush back.   I feel this is going to be a great experience for me and the finished product will be enjoyed by all.  We have to get legal releases from everyone that we want to name in the book. I have had to get back in touch with so many of the people that were part of Steven's saga.  Everyone is thrilled and can't wait.


Just a unbelievable tid bit before I sign off.  In reaching out to the people as mentioned above, one person  that we reconnected with is the in-flight nurse Rose.  She was the nurse on the med flight home from Aventura to Boston. For those of you who saw the news cast when we returned home to Logan she was the one in the video with the long blonde ponytail.  She remembered Steven vividly and we talked with her for hours via the phone. We did not want Steven on camera with his helmut and Rose told us that she was joking with Steven as they left the terminal and were going to the ambulance.  She told him to smile for the cameras and he looked up at her and did.  She told us that she knew then that he was in there and things were going to be alright.  This little story warmed our hearts and just confirmed the fact that we already knew that Rose was Angel.   Amazingly enough Rose at 29 just suffered a stroke.   Unbelievable.  She is doing well!   Steven and her compared stories.   We will continue to keep in touch with her and have made a lifelong friend.


These little events that happen along the way add to the tapestry of our Saga. Each adds a new thread and leads us in new directions.  Thanks to all of you who have so  enriched our experience!

 

Tanya

UPDATE FROM STEVEN'S DAD...

 
Steven and Dad 11-10.jpg


Of all the days of the week, I look forward to Tuesdays the most. That’s the day Steven and I ‘batch it’ together at his house; We have no agenda, we follow no schedule, we have no rules. Instead, we follow our manly instincts, loosely rolling along, to wherever that might lead us.

 

That’s not to say our time together is all fun and play. In fact, most days, Steven works harder than ever with me, trying to rebuild himself, get back his self-worth. For me, it’s difficult to comprehend the mental ‘blocks’ that confuse his reasoning, tangle his tongue into indecipherable  babble. The inner struggle he goes through is written all over his face.

And, yet, Steven (being Steven) never cracks – he keeps rolling the dice, working the hand that God deals him.

 

I think Steven enjoys our time together. I sure do. We have our laughs –yes, lots of those. For example, the first time I made him lunch: He wanted a cheese and ham sandwich. With mayo. And butter. Toasted.

With visions of a gooey toaster, oozing melted butter/cheese/ mayonnaise, I ask “Toasted?” Steven replies “Mom does it that way.”  Hmm. I try again, “Are you really sure?”  “Yup!”

Days later I discover Steven wanted the sandwich *grilled*, not toasted. HA!

 

Then there was “The Great TV Caper”:  A therapy 'challenge' I came up with for Steven was to see if he could remember how to program his high-tech Pioneer plasma set. In short, he couldn't! At least, at first. Then, more trouble. A few of the remote buttons stopped working.

This is huge because everything **has** to be done via the remote. We were more-or-less screwed- no picture, and, no way to fix. Oops.

Fixing a non-functioning remote wasn't part of my plan. But, we soon realized that, because the remote hadn't been used for quite awhile, the plastic push-buttons had sort-of "locked". I delivered a few, well-placed fist-whacks, and the recalcitrant gadget was back in business!

Once the remote was fixed, Steven spent about an hour fiddling around with the TV's multi-layered menu system. As he did this more and more of his memory (how to program the tv) slowly started coming back. That was plenty cool to watch.

In the end the TV is working again, and, we got a huge laugh out of our silly machinations.

 

Last Tuesday our day was all work, no play. We became immersed in a seemingly easy project he was asked to do by his speech therapist, Danielle. As we delved into the project, Steven’s aphasia and apraxia boiled-up, stunting his cognitive processes. Soon, we were struggling with elementary math and using four letter words. The way forward was to break-down the road blocks into smaller bites, stopping only to wipe the sweat from my brow. Yes, it was I who was sweating, not Steven! He was calm and composed, typical of Steven just being Steven. Amazing.

 

We continue to ride the emotional roller coaster that marks his rehabilitation. The way Steven gracefully accepts these challenges makes me proud to walk beside him along his new path in life. Maybe that is best thing about our time together, that we laugh, love, share and bond. The way a father and son should. For me, Steven is truly my inspiration. 


21 FEBRUARY 2011

HAPPIEST OF BIRTHDAYS TO TANYA (2/20)!! 

Tanya had a great birthday; she went out to lunch with Steven to the Olive Garden, had cake made and delivered by my mom and dad (well my dad had no part in the making...), and had a few of her dear friends stop over for a visit.  We all wish Tanya a wonderful and blessed year ahead -- she deserves it! 

Update follows from Tanya:

The New Year is in full swing and so is Steven.   Steven has been working as hard as ever to regain his speech and it is paying off.  His speech is much more fluent and understandable.  We are now realizing that there are some significant cognitive deficits, which his Speech Pathologist, Danielle, has been diligently working with him on.  Danielle feels that the three 1-hour sessions a week are just not enough time and that intensive therapy is what Steven needs.  We are so looking forward to attending University of Michigan Aphasia Program in June, which has just that therapy with thirty hours a week.  We are trying to work with Steven to get his stamina up to be able to endure this.

 

Socially Steven is doing great.  He just recently went to lunch with some prior coworkers all on his own.  I felt like a mother letting her child go to school for the first time.   He did awesome; he was gone for 4 hours and really enjoyed himself. The more he interacts on his own the more he can become independent.

 

On the down side, just when we thought we had them licked, Steven had a severe seizure on Wednesday, February 9th.   I called to check on him and for over an hour he did not answer.   I called the neighbor who came to check on him.   He said Steven seemed fine, but he really did not know what to look for.  About 1/2 hour later Steven called his parents and myself and told us he had a seizure.  My train of course cooperated with me highly that night (sarcasm) and was 45 min late.  Once I got home, he was in that after period where he was totally out of it and groggy but this time he had a severe headache, which was not the norm with the past seizures.  We waited awhile but it got worse so after calling the 24 hour BCBS nursing hot line, they told us to get to the ER immediately.  After a CT scan and blood work all was ruled status quo.  His neurologist was consulted and they upped his new seizure medicine a bit to ward this off from happening again.  We have been told it’s all trial and error.

 

Steven is finally feeling a bit better, the smile is back and he is not so tired.  He is scared and we can tell that they take their toll on him, but as usual Steven takes it in stride and goes on.

 

The theory on seizures is two fold; there are doctors who feel they are bad and medicate to stop at all costs.  But there is a new train of thought that seizures (not chronic epileptic seizures but seizures like Steven's) actually jump-start the brain. They are scary and do have side effects to the body, but there may be something to this.  Steven usually is clearer or has some breakthroughs after having one.  The neuron connections are always re-routing and they eventually do hit the dead brain tissue, which in turn causes a seizure.  

 

I have termed February, “Doctor Month”:

 

We saw Dr. Vora (botox) last Friday. She said Steven was looking great and is going to increase his dosage by 100 to blast his wrist some more. The next injections will be on March 25th.

 

We saw Steven's hematologist Doctor today and met the head of the department who is a leading researcher in clotting disorders.  He had wanted to meet "this Steven Hill".  It was great.  His regular doctor, Dr. Piazza, was amazed at his progress since he has not seen him for 6 months.   We had a great talk about the protein C deficiency and found out a few new things.   It’s definitive that Steven developed the clot first, and it was in his sagital sinus.   We learned that clots in the sagital sinus vein ALWAYS cause bleeds.  People who have the protein C deficiency tend to clot in "weird" or uncommon places, for example the sagital sinus.    Steven just had the right mixture of elements combined with his disorder to create the perfect storm.  He was highly stressed, was in the sun, dehydrated and drinking alcohol.    His clotting and bleeding caused the perfect dilemma as well.   The treatment for one is almost deadly for the other, but our Steven endured everything that was thrown at him.  We were pretty much told by many doctors that he was a miracle and really should not have made it.    Well he is our miracle and I will do everything in my power to get him the best treatments and therapies out there offered for stroke survivors. 

 

We go to see Dr.Eslami, his psychiatrist, this Friday for his counseling followed by our counseling.  She is a gem, a real find.  She is like a stroke therapist combined with the psychiatry.   She was just what we were looking for.

 

Steven goes to see his primary care doctor next Friday, February 25th.  She is very excited to see him since she had coordinated his care from day 1 and has yet to see him physically.   It will be nice.  She has to clear him for Michigan and also write the doctors reports to send to the insurance to petition for payment of the aphasia course.  We shall see.

 

Steven is now home a lot by himself and he entertains his fluffy friends, but Logan by far is his baby.  See picture below that I have entitled “Man and His Cat”.  That gorgeous smile on Steven just warms your heart.

 Steven and cat 2-2011.JPG

Steven would love to hear from his friends; please email him at steppa806@gmail.com.  He also needs to get out and do things on his own, so if anyone wants to come take him to lunch or just an activity, that would be awesome.  Please let us know.

 

Again, thank you for keeping up with us and for always supporting us.   Strokes in the age group 15-35 yrs of age increased by 51% per a recent survey.   So our work and knowledge is critical to keep Steven and other young survivors shooting for the moon.

 

Love and Hugs,

 

Tanya



16 JANUARY 2010

"CAN YOU HEAR ME NOW?!"

Steven is slowly coming back into his world of technology.  He got a new Windows 7 smart phone this past week and is loving it.  We wanted him to get used to using a cell phone again so he can be ready for our June trip to Michigan.  We are have our plane tickets and room booked and Steven has secured his spot for the June session.   See photo below.

Steven with cell phone Jan 11.jpg

January 31st will mark the end of Steven's outpatient OT as Spaulding.  Steven has decided that he wants to concentrate on his speech 100% and OT will be done at home by himself, myself, Mom Hill and Lisa (his aide on Wednesdays and Thursdays).  Steven has really vested himself in getting his communication skills back.  He is working very hard with Danielle (his SLP) and everyone to achieve this goal.  We are putting him in more situations where he has to use these skills.

Yesterday Sat 15th we were invited to Brian and Sarah McAllister's for lunch and a visit.  Steven easily agreed to go.   He initiated more conversations and was able to wholly participate in our group discussions.  Thanks Brian and Sarah it was a great day.

Steven is becoming much more social and enjoying visits and outings. If anyone wants to come and go to lunch or would like to hang out please give us a call.  It is great for him to see everyone and for his speech.

Hope everyone had a great New Year!  We are positive 2011 will bring bigger and better things for Steven!

The National Stroke Association is holding a virtual stroke fair starting January 19th.  If you are interested in finding out more about stroke, need resources or wish to share resources this is a great event.   Please see link below to register.

 

Homepage | Forward to a Friend | Make a Donation
Virtual Health Fair Email Banner

Dear Steven, 

Educating people about the warning signs of stroke and how to prevent it is one of the most important jobs we have at National Stroke Association.

That’s why we’ve been working so hard to organize next week’s free Virtual Health Fair on Wednesday, January 19. It’s a unique opportunity to learn about the disease and what steps you can take to fight it.

But our efforts can only help those that know more about our education opportunities. That’s why I’m asking everyone in National Stroke Association's community to reach out to their friends and family and invite them to this special event.

There are so many reasons to take part in this special event. Here are just five:

  • Stroke is up to 80 percent preventable. What you learn next week might save a life!
  • Stroke affects millions of people in the U.S. That's including six million survivors, their families and caregivers. We’ll answer basic questions and share practical tips for life after stroke. 
  • No homework required. All you have to do is register and attend online.
  • Being healthy never goes out of style. Learn how to reduce your personal risk for a first or second stroke. 
  • Stroke is serious, but we’ll make learning about it fun. Our health fair includes engaging classroom-style webcasts, live Q&A, online chat with booth hosts and tons of downloads, prizes and giveaways!
Register today:   http://events.unisfair.com/index.jsp?eid=670&seid=30&code=email1-14

Tanya

 

27 DECEMBER 2010

HAPPY HOLIDAYS!

‘Tis the season for all to be thankful for what we have and what we have accomplished in the year. We are again especially grateful for the progress that Steven has continued to make in 2010. 

 He once again went and received Botox injections to reduce the spasticity in his right arm and hand.  He continues to receive OT 3 times a week and speech 3 times a week. 

The big news is that Steven’s speech therapist, Danielle, feels that he is ready for the next step in his speech therapy.   We applied and were accepted to the University of Michigan’s aphasia program for June 2011.   Steven and I will move to Michigan for one month while Steven will attend 30 hours a week of intense therapy.  Ten hours individual, 10 hours group, 10 computer, arts and music.  There are also weekly activities such as a dinner, where the students will be able to practice their speech skills.  Only 5 people are accepted per month, so the program is very individualized.   Danielle thinks this is exactly what Steven needs.  I will attend a caregiver’s course of about 4 hours a week and a support group session as well.  The program is going to set me up to be able to work remotely for 30 hours a week.  We are both excited and nervous as this will be a big undertaking.  I feel this is a positive step in the right direction.  It’s something new and exciting!  Steven is of course worried about his furry friends Salem and Logan.  No worries:  my Mom and Dad will be taking them to Ogdensburg, NY for a kitty vacation.

Pic for Update Dec 2010.JPG

Steven has been busy shopping on the internet with the help of his mom for Christmas.  He is very excited this year that he is able to a lot of this on his own.  That sneaky grin says it all and he is very proud of himself.

We attended my holiday party at the Taj hotel in Boston on Saturday Dec 11th (see photo).  I asked Steven awhile back if he would attend with me and to my surprise he answered with a positive YES.   Dressed in a 3 piece suit, red shirt and tie, he looked as handsome as ever, although we forgot you can’t tie a tie with one hand, so we had to improvise and I tied the tie.  Needless to say I’m definitely not an expert, but no one was the wiser.  Everyone at my company was amazed to see how well he looked.  He practiced his conversation skills and did very well.  This was extremely difficult for him, due to all the extraneous stimulation.  There was outside conversation, music, strangers etc.  He had to take all this in and process his own conversations all at the same time.   He was exhausted.  The President and founder of Gordon Brothers gave Steven a special welcome in front of the whole company.  It was very emotional.   We spent the night as a treat and enjoyed breakfast in our room the next day before heading back to Bellingham in the driving rain.

Christmas at the Hills this year will be December 18th, as Steven and I will be heading to Binghamton, NY to spend Christmas day with my family this year.   We are looking forward to both days and are so thankful for our wonderful family and of course our wonderful friends and supporters. We would not be here without you!

Happy Holidays and check back for another update after the Holidays.

Hugs and Kisses,

Tanya and Steven

29 NOVEMBER 2010 

THANK YOU TO EVERYONE FOR MAKING OUR 2ND TURKEY TROT A SUCCESS!

 




12 NOVEMBER 2010

 

TROT, TROT, TROT... JOIN US!

 


20 OCTOBER 2010

 

AN UPDATE FROM TANYA...

 



11 SEPTEMBER 2010

 

Welcome, Autumn!

It feels like fall out there!  Hopefully the cold air is making many of you think of apple pies and roasted turkeys…and our turkey trot on Thanksgiving morning!  Online registration will be available in a couple weeks.  Also at our turkey trot: The Steven T. Hill Stroke Foundation cookbook will be for sale!  Many friends and family members contributed to this special project.  Please stay tuned for more details!

Steven Botox Sept 2010.JPG

 

 

Tanya says: “Steven's speech is getting better.  He still is having great difficulty pulling the words from his head and making sentences.  He has even more difficulty typing or writing sentences, because this is another step on top of just putting together a sentence and once he gets to this point, it’s gone out of his head.  He still has much trouble with his motor skills and articulation, especially with the letter S.  It’s strange because we can hear that he is not saying it but his brain hears that he is.  That is what is happening with a lot of his words, the brain thinks its fine, when it really isn’t.   Recently discovered is that Steven is having some trouble with his letters also.  Put all this together and you can just imagine the frustrations that arise.  We take speech for granted and really don’t understand until you lose it how difficult it is to function in society.  We as family members have learned what certain things and hand gestures mean.  We have also gotten into the bad habit of not letting him finish his sentences and guessing what he needs.  It’s just habit we all have to break and we need Steven to make his mistakes and work on his words so that he can get those skills back.”

 

Sue W Monkey Shirt Milwaukee.jpg

 

 


ARCHIVES:

> Jan-Aug 2010   
> 2009

We are in the process of archiving older posts and bringing over much of the content from the earliest days of Steven's stroke, where I posted on a Blog site.  In the meantime, you can visit the Blog site, and read the earlier posts: www.STHStrokeFoundation.blogspot.com.

 

Tanya’s roommate at college, Sue, recently sent in this great photo of herself wearing her monkey t-shirt.  The photo shows her at the Milwaukee Brewer’s game on August 26th.  Her email to me was so heartfelt, I asked if I could share it with you all and she agreed:

“I have been following Steven's story.  I am so inspired by his continued drive and big smile!  :)  In fact, in May 2009 I had just started Weight Watchers at my work. I was off to a good start, but when I heard the story of Steven and his stroke... I figured if he can battle on, so can I... I lost 50 lbs, reached my goal weight in March 2010, and continue to live a more balanced/happy life. Steven has been a constant inspiration to me through that journey and the day-to-day decisions/balance of life. SMILE ON STEVEN AND TANYA! NEVER GIVE UP!”

Thank you to Sue for allowing me to share her story.  Steven continues to be an inspiration to us all!  We love you, Steven!

 

Steven is doing great!  He has been fitted for the Saebo splint, which positions his arm so that the muscles align properly.  He wears it 6-8 hours per day.  He is also getting a Dyna splint, which will stretch his wrist upward to stop the shortening of the tendons that is currently happening.  The picture shows Steven receiving another Botox treatment yesterday.  The results of this should become visible in 2-3 weeks.

Steven is staying busy by continuing aqua therapy (which will move to an indoor pool shortly) and is in the beginning phases of volunteering at a local animal shelter.  He has made new connections with other young stroke survivors and is starting to interact more socially via Facebook, email and in-person experiences.

 

Steven’s insurance no longer covers his OT services, so he must pay for those sessions in full on his own now.   He is seeing his OT 3 days a week still, as we are determined that he will get functional use of his hand and arm.  The current round of Botox has helped a lot but the tone it still pretty hindering.  Hopefully next round they will give him more.  He still can get almost double more. We are currently in the process of making a home OT picture book for Steven so he can do some exercises on his own.  He knows how to do them but cognitively he can't organize his thoughts to do a routine on his own.  We are also looking into getting a private person to come and help with that.

Steven OT Oct 10.JPG

The treadmill arrived Sept 24th and Steven loves it.  He is up to 17 min per day at a speed of 1.7.  That doesn’t seem fast or a lot of time, but to this determined man it is a huge step forward.   This daily routine should help Steven gain strength and endurance as well as tweak his gait.  We have already seen vast improvements.    The 15inch TV attached isn’t bad either.  It really helps pass the time.

His speech continues to improve and is very good at times.  The clarity in his mind comes and goes.   He has recently been given tongue twisters from Danielle his speech therapist, to which he said: "too easy".  He also helped her order new tires for her car.  Danielle is trying to have Steven do every day functional tasks and has determined that he has not lost his research ability and internet surfing skills.   Steven continues to play on Facebook and will chat short words to me every day.  Slow and steady.

Steven had another seizure on Monday Oct 4th.  I was home and said it came out of the blue.  It was very short but still a full blown grand mal and very scary.   It brings me back to that fateful day in Jamaica every time I witness the seizure, it is really hard.   This one seemed to be different though.  Steven says that he heard my voice talking to him through it.   We can only guess that his mind was not 100% locked up.   He did come back around afterwards pretty quick as well.   He usually is very tired and foggy for 2-3 days post, but this time he wanted to go to therapy.  He was still tired but bounced back a lot quicker.  The neurologist still decided to put Steven on yet another anti-seizure med in addition to the full dose one he is already on.  The new drug has some very bad side effects which scared us all at first but we were assured by several sources that Steven is on a very low dose and as long as we are diligent in monitoring his Coumadin and getting his blood work done that it should be fine.  Poor guy looks like a pharmacy on his kitchen counter.

We are coming up on our 5 year anniversary and just like last year, our love couldn't be stronger.   I love and admire the courage and strength that Steven continues to show every day.   It has got to be hard being rehabilitated 24/7 for the past year and 1/2 of your life and still a lot to go.   We have so much to look forward to in our lives including currently redoing our kitchen.   Steven has decided to take me out to dinner next weekend for a nice meal just the two of us.

S and T honeymoon.JPG

(Photo of Steven and Tanya on their honeymoon)

Steven's next steps are to start to get out and do things in the community.  We have not determined how this is going to happen since he can't drive and still goes to therapy almost every day a week.  But this will be the next big step to take.

Steven has also agreed for the first time to travel to Binghamton NY for Christmas.   We will spend the holiday with my sister Becky and her family.  This will be good for Steven to get away and have some time off from his daily therapy.  Although I’m sure Nessie and legness will be going along for the ride.

 

 

Register NOW for our 2nd Annual Turkey Trot!  I promise, you will have FUN!

Here are a few (really excellent) reasons why you should register now and join us Thanksgiving morning:

*We will be taking day-of registration at a cost of $25.00/pp (children under 12 are always free), however we encourage you to register online  now for the discounted rate of only $20.00/pp!

*The event begins and ends at Steven's childhood home (11 Sherman Street, Lexington, MA) which is easy to locate in the center of town, offers lots of nearby free parking and is perfectly situated to give us beautiful walking and running loops.

*Both the 3K walking loop and the 5K running loop take a mere 20-30 minutes to complete... this means with a start time of 8:30 a.m., you will be home in plenty of time to finish all of your Thanksgiving duties before your guests arrive!

*There will be delicious muffins, Starbucks coffee, PRIZES, turkey costumes and hats and MORE!

*The first 100 entrants will recieve a FREE stainless steel with leather water bottle!

*Your body will thank you for getting a little exercise before indulging in your turkey dinners, and we will be forever grateful for your participation and contribution to Steven's continued rehabilitation!

*My parents bought me a megaphone for my birthday and I am very excited to use it.  :)

*And last but not least...STEVEN AND TANYA WILL BE THERE THIS YEAR!  YAY!

STEVEN'S LATEST UPDATE FROM TANYA...

Steven will be participating in a clinical trial for a device called myomo (myomo.com)  It's an arm stim for the elbow.  The device was designed  at MIT and the company that makes it is located locally in Cambridge MA.  This works especially well for people with increased spasticity like Steven.  He can move his elbow but it is very tight.  This device takes the signal from the brain and then moves the elbow the rest of the way with a robotic arm device. What's neat is that it doesn't move it for him, the singal has to come from the brain in order for it to move.  We hope this will just be another added benefit to his therapy.  Stay tuned, our first appointment is Nov 16th.

Steven just had an updated neurology appointment with his Doctor,  Dr. Pilgrim.   His mom and dad took him.  Dr.Pilgrim was astounded at Steven's progress, and was thrilled with what he has accomplished.  He is still trying to tweak his antiseizure meds so that Steven does not suffer another seizure or have that feeling that he is going to have one.  Dr. Pilgrim has stressed that it is important to keep Steven motivated and work on getting him to do therapy on his own.   His motivational center was damaged in the stroke and that initiation reaction we have to get going, Steven does not have.  We are trying to work in ways to give him cues and get him going.

Steven is loving his treadmill;  he is doing almost daily walks 15-17 min at a time.   His gait is looking better and better.  He now needs to start to gain the stamina.

Steven's speech is improving tremendously.  His words are coming faster and he has "more clarity in his head," Steven's words.   His motor skills at pronouncing the words still need alot of work.  That can be accomplished with word drills, one of Steven's favorites  (not).  He will get there no doubt at his own pace.

We are continuing every effort we can put in OT and rehabilitating his arm and his hand.   He is now doing what we term "purposeful exercises".   He turns on and off the water, opens the bathroom door, opens cabinets, turns on light switches.  Anything that requires a brain signal.  Exercise will only strengten the muscles but  it won't make those new connections in  the brain.  He has to be doing something that the hand and arm are meant to do.  We can already  see progress.  He is moving his index finger and thumb ever so slightly.  This may not seem huge, but it is.  It means that signal is getting there.  He just has to make it stronger.

We recently went back to Spaulding to visit our friend Amy, a fellow stroke survivor we met at the reunion. She had to go back to Spaulding after having surgery remove a second AVM from her brain.   This was the first time that Steven had been back on the 6th floor stroke floor.   A few of his nurses were there.  The awe in their faces said it all.  One nurse couldn't stop hugging him and could not believe it.  They rarely get the chance to see patients after they leave.  It was a great experience for Steven and for them.

I have now officially joined the Spaulding Young Professionals group.  We work in the community to spread stroke awareness.   I have been asked to speak and tell our story at future seminars and meetings. We also work to help out at Spaulding once a month. Coupled with our foundation this will be a very rewarding experience and can really get the word out there.

We will be at the Turkey Trot this year... we are excited and hope to see you there!

 

What fun we had on Thanksgiving morning!  Sure, it was a bit chilly... but that didn't stop approximately 75 participants for joining us in Lexington for some coffee, muffins, exercise and fun.  The 2nd Annual Turkey Trot was a solid success, and we thank you tremendously for that!

Please check out many other wonderful photographs that my Dad and Tanya took throughout the morning: http://picasaweb.google.com/jbqwik/TurkeyTrot2010#

Steven was all smiles as he greeted runners and walkers.  He also had the honor of pulling the 4 lucky winners of our excellent, and often yummy, prizes!

Walkers were satisfied by the steep climb that Meriam Hill offered them, and the runners impressed us with their endurance and speed.  Among the noteworthy athletes were several youth runners that bested many of the adults!

Group.jpg

As has become tradition, the first place male and female runners are crowned "Turkey King and Turkey Queen 2010" and are (embarrassingly) made to wear glittered sashes adorned with feathers and a turkey-inspired headpiece of some sort.  This year, Nico Gallinelli earned the top spot as Turkey King with a time of 20:51.  Defending her title as Turkey Queen, Daniela Gallinelli crossed the finish line with a time of 25:21.  Congratulations to our winners!

We hope this event continues to grow!  Please consider joining us next year!  Happy Thanksgiving to everyone.

 

 

April Update from The Parents: Leg Work, People Fit, and Tanya Takes a Trip (to Milford Hospital)

 

Steven good-naturedly accuses us of deliberately annoying him with constant new routines.  He has a point: The latest focus is on Steven’s leg, with the goal of improving his gait.  Our Bioness contact, Stacy, is helping us trial-test the newly developed Ness L300 Plus.  The thigh attached ‘Plus’ device works in coordination with the calf muscle-attached Bioness L300 Foot Drop System to stimulate a neuronal signal.  The idea is for the brain to become familiar with, and, to memorize a fluid, natural-looking step.  Steven is the first in the area to use this device.
Along the ‘annoying’ line, we decided it was time to have Steven re-evaluated at our favorite exercise facility, People Fit
www.peoplefit.net .  Co-owner Pat Agostino, worked to map new routines designed to keep things interesting while increasing core mobility. 
Apparently, things were all going so smoothly we were overdue for some calamity, and Tanya was the target:  She contracted Salmonella, sending her to Milford Hospital for 6 days, then another 6 days at home.  During this time, Steven stayed with us, and actually had a virus himself.  All is good now, and everyone is back to full strength as we progress towards the Next Big Thing: The golf event!  We hope to see you all there.

 

 An Update from Tanya:

 

 

Steven and his parents attended an event at Faulkner Hospital on April 25th.  They had the great pleasure of meeting Julia Fox Garrison, author of   Don't Leave Me This Way , or When I Get Back on My Feet You'll Be Sorry. ( This is a much recommended read)  Julia is also an amazing stroke survivor.  I had the pleasure of reading her book quite awhile ago when Steven's Dr. Vora recommended it to me.  Since then Julia and I have touched base via email and facebook.   Steven and his parents said her talk was phenominal and how much they could relate to what she was saying.
Julia, after her talk pulled Steven aside and gave him one of her special Angel coins.  She gives them out to kindred spirits so they have something they can hold onto in a time of need.  See picture below.
I unfortunately was unable to attend due to my illness mentioned above, but Julia and I feel there will be a meeting with all of us in the near future.

 

 JFG_Faulkner_04.2012_DSC1236b1nxps.jpg

 The Next Big Thing:

Yes, it's here the 2012 Strokes Fore Stroke Golf event.  The event this year will be at Butter Brook Golf Course in Westford Ma on Monday June 25th.  We have fantastic raffles, we have the Boston Bruins, we have a new car, and much much more!   All we need now is YOU.   Earlybird registration ends May 15th, so hurry and sign up to get this great discount.  You can register on the events page, either by downloading a mail in form or you can register right online. This is an event not to be missed.  Of course Steven will be there greeting everyone with his fantastic smile.   He may even give a speech this year.   Hope to see everyone there.

sthGolfBall3_3781-lgo.jpg

 

 

 

 

10 MARCH 2012


STEVEN IS GREAT, AND TANYA RECEIVES AN AWARD

 

 

 

 

 


DSCN0451nx.jpg

 



Everyone gathered in the event tent and enjoyed a meal catered by The NewBridge Café in Chelsea, MA. www.Newbridgecafe.com.  First, Second and Third Prizes as well as longest drive and closest to the pin were given out.   No one got a hole in one so until next year the Jeep goes back to the dealership.  After the numerous raffles items were drawn we held the final event of the day, (the putt off ).   See attached link for the pictures from the tournament. Click here

 



Yes, it's here the 2012 Strokes Fore Stroke Golf event.  The event this year will be at Butter Brook Golf Course in Westford Ma on Monday June 25th.  We have fantastic raffles, we have the Boston Bruins, we have a new car, and much much more!   All we need now is YOU.   Earlybird registration ends May 15th, so hurry and sign up to get this great discount.  You can register on the events page, either by downloading a mail in form or you can register right online. This is an event not to be missed.  Of course Steven will be there greeting everyone with his fantastic smile.   He may even give a speech this year.   Hope to see everyone there.

© 2009 Steven T. Hill Stroke Foundation

Monkey

The Steven T. Hill Stroke Foundation was created so that family and friends can stay informed about and participate in Steven's recovery and so that fundraising can be done on Steven's behalf.