A collection of updates on Steven and the Foundation direct from Steven's sister, Kelly.
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!
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.
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
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!
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.
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
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!
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.
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
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.
25 NOVEMBER 2011
WELCOME, AUTUMN!
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:
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:
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
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.
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.
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.)
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!)
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.)
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.)
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!
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.)
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,
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.
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 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.
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...
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
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.
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 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.
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.
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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:
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.
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!
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.”
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.
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.
(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!
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.
