Saturday, in the Hub, I think it was the 4th of August

So, the family is hanging in the sun room of the west wing, 9th floor. T, A & J are quiety enjoying the second season of Rescue Me, courtesy of Sven and West Stockbridge (say it loud and say it proud) Video. We've just been hangin' for the past few hours, after getting caught up with Tim and re-decorating his room. The Hotchkiss Mobile had to be carefully re-positioned to allow the ceiling mounted hoist it's full range of movement. Amy carefully hung a wonderful collage of photos featuring MMRHS friends that we delivered from Regina. We talked a bit about what's going on at home and reviewed the past few days at Spaulding. Nothing new, but we got a few new terms. Tim's muscles are now categorized as grade 2 (no resistance) and grade 3 (showing resistance to gravity). He is working to improve to grade 4, which is resistance to some weight. Grade 5 is where he was before the accident. So, that's what he's working towards.

Improvement news is that his abs are strengthening and he can pull his body forward when he is sittin in his chair.

We also learned that his new Berkshire neighbor is Dee Agar, of Mt. Everett HS. He was in a car accident shortly after Tim arrived at BMC, and they apparently were in CCU together for a bit. We did not meet them while we were there, I think we were too focused on Tim. We'll look forward to meeting Dee, his family and friends out here.

One of the benefits of being in the West Wing is nice sunsets! Good night.

HI!

Hi Tim!
Well after many attempts I have figured out how to write on your Blog! Well first off I miss you so much I think about you 100 times a day. So I started a list of things that we are going to do once you are home. So far some of the things are explore the cave you found, swimming at the black hole, drive in movies, go to sneaky peaks dance club, just to name a few. I know that you must be very pumped about all this.
My Dad, Mom, Dustin, and Nadia all send love. Last time I talked to Nadia on the phone she said she has to go and see you in Boston, because she thinks you hate her. “I think Tim hates me or he thinks I hate him so I have to go and see him and tell him I love him and I never hated him” haha
Well that is about it. I am going to come on Monday and see you as long as your mom and dad say that is ok. Oh yeah, I just added blueberry picking to our "to do list" because I went with my mom the other day we got 11 pounds and no joke I ate them all!
OK I love you TIM!!!!
Brigitte

A quick hello (from someone who knows the road from Boston to the Berkshires pretty well)

Tim,

Hope this post finds you well and enjoying the (rationed) goodies that have been delivered from the Berkshires. The reports from your Dad have us all smiling back home. We've heard how strong you've been and continue to be. I can't say loudly and strongly enough how much of an example your are to all of us. Your courage and determination remind all of us just how strong the human spirit is and how luck we all are to have what we have.

I won't hold it against you that you moved into the neighborhood without telling me (if I didn't have such a horrible slice, I could probably hit Spaulding from the State House with a solid 3 Iron, but thats a big IF). So, if you are told you have a random, balding, young visitor, you'll know who it is.

Keep up that incredible spirit. I know when my family went through a tough time, it was the ability of all of us to pull together, to smile through the tears, and laugh, every once in a while, in spite of it all. You're a lucky kid to have such great parents, such great friends, and a community thats pulling for you. But more importantly, we're lucky and blessed to have someone like you in our lives. Keep working and we'll keep praying, and save me some of those goodies. James Taylor makes the turnpike from the Berkshires to Boston sound romantic, but there's only so many times you can eat at Burger King or D'Angelos.

Sincerely,

Ben

"Every once in a while you get shown the light, in the strangest of places if you look at it right"

Our bags are packed, we're ready to go

We got a call from Uncle John today around 6PM. He had a nice visit with Tim - was very positive about his future. Seems he has a vision and a plan. Hmmm. He seems to have a good handle on the technologies available to him and he plans to use whatever he needs. John says that the movement in his arms is much more controlled and intentional than earlier.

After a delicious dinner of fried chicken and garlic mashed, courtesy of sister/chef Kate, we spoke with Tim. He sounds good. He had another session on the bike and next week he'll be doing two sessions on the bike and and two sessions on the LOCOMATOR!!!! Some concerns last night - his spasm medication (you might recall he suffered those back at BMC) was reduced, but apparently prematurely as he had another episode. This morning, the medication was put back at the same level and all is OK. Tim got a nice care package today from our neighbors Sheila and Randy today and he enjoyed the treats, but is rationing them carefully!

Amy, Jancy and I are packed and ready to go back to Boston tomorrow, with some treats and greetings for Timmy. Today was a busy day, though. This morning, while I was getting my Cheerios ready I was pleasantly surprised to see Tina come up to the back door with a leash to take ol' Sambone for a walk - no one is forgotten. Mid-morning, Amy met with some representatives of the insurance company (who have all been very helpful and available to us) to review how our 1850's country home might be made accessible for Tim. Interesting, but do-able is the word (more on that after we get a report). Later in the day, Amy was able to solve a mystery. Seems as though someone sent pizza to the 9th floor for the staff on Monday night after Amy went home. The staff couldn't figure it out and we couldn't either. Today, we learned that it was Katie and John from (where else?) the greatest small town around - West Stockbridge! Thanks guys.

Well, next weekend is Zucchini Festival here in West Stockbridge, and the planning and preparations are at a fever pitch! We're so sorry we won't be able to help out and enjoy the day. I'm sure that Tim wishes he could strap on his waders and help catch the "Zucks" as they float downstream. Just wait 'til next year! At any rate, we'll expect someone to post a report on the day's events and highlights.

Hi Tim

Just a note to let you know that you are in my thoughts, and we are all wishing you the best and continued progress. Your determination and positive spirit are outstanding. If I make it home in the next few weeks to visit the family as planned, I will be by to visit and see that “buzz” cut that Paul told me about.
Love,
Joanne

Easy Rider

Another good day for the lad. My report came in via two phone calls. Grandpa drove up from the Cape and enjoyed a nice lunch out on the patio with Tim, who fed himself using the various tools provided to assist him. Fresh fruit salad and a nice smoothie, along with a sweet treat. Over lunch, Tim let him know about his first experience with technology. Not the Locomat yet, but sort of a recumbent bicycle was the new activity of the day. Tim sat on this bike, had his feet strapped in and the machine moved his legs in that motion. At the same time, electrodes were attached at key spots on his legs to stimulate muscle and nerve activity. Disclaimer: this is a third party re-accounting of an actual event, but does not involve any information gleaned from an actual therapist or doctor. Grandpa said that Tim was able to explain and understand the science behind it. Uncle John checked in a bit later, and reported that Tim was relaxing and in a good mood. Tim had told him that there is a new Bershires resident at Spaulding - Dean Agar. Apparently, they were at BMC together. We'll look forward to meeting him. When Amy and I called in later, he had time for just a short conversation, but was looking forward to tell us in more detail about his experience when we return this weekend.


Tim and Brendan were moved to a new wing today - Room 903. The room has a hoist permanently mounted on the ceiling, which will be helpful as both still need assistance getting out of bed. We did learn that he got a nice card from Aunt Merrilyn in NC and apparently, there is a poster from Shurika hanging on his wall to lighten things up.

Also of note - I invited our 100th person to join the blog. It's growing in leaps and bounds and I think there's a lot of connectivity to Tim and support generated through that.

Good night!

HEY TIMMY

Sorry for the blogging goof the other night.....

Very simply, I just wanted to let you know that you and your fabulous progress are on our minds ALL the time...... We are moved by everything you have accomplished already and sort of have this powerful sense that you have only just begun. We are hopefully trying to visit with you on our way back from the Cape next week and can't wait to see you, so keep up the good work. We're biased of course, but those Baldwin Tees are something magical....

Love Mrs. B

Thinking of you

Hey Tim, just writing to let you know that I am thinking of you. I'm at camp but I just wrote you a letter and had all my campers sign it, so you'll be getting that soon. All of these positive words that I'm reading about your progress make me so incredibly happy and proud of you, and I know that you will continue to do so well. I will be around till late September so I want to come visit you, if that's okay. Anyway, keep up the great work and remember: B-20, ONLY LOVE.

-Elyse

Give a man a fish and feed him for a day. Teach him to fish and feed him for life

Well, Amy returned today to the Beautiful Berkshires via bus into Lee, where I picked her up. We're tired. How wonderful to arrive home to a delicious meal delivered by friends Janie & Steve, some nice conversation and a review of the day.

I had already heard, via email from Uncle John, that Tim was asleep at 4:00! Amy confirmed that the new schedule did him in, and he was out like a light by 2:00 actually. Tim was outfitted with some new tools for eating today, and his abililities were increased to the point that he was actually able to eat a grape with a fork. I think I'm gonna git me one of those! He is now feeding himself more easily, and enjoyed a nice lunch with Mom on the patio.

Back to the early bed-time, Tim had his butt kicked by a full day of therapy, pretty much the same stuff, but now 4 hours of it, so he was ready to conk out.

He had a nice visit today from an Angel - Angie Snow and husband Fred, son Ryan stopped by with a nice gift bag including Red Sox attire. It was a nice opportunity for Amy to spend some time with long time friends and Tim is very excited to support the Hose while watching the games on TV.

Steady communication from the community keep Tim's spirits up, and support Amy and me, too! Today's mail included a handwritten two page letter from Uncle Chris that left Tim deeply moved; a care package from the (hardware) Baldwins that had too many goofy gifts to mention made Tim smile - and included a Baldwin Hardware West Stockbridge (rocks), MA tee and a Beatles poster which is now brightening the room; a package from cousin Melanie included gifts chosen by her young children Cameron and Sophie - a disco ball (how did they know?) and a Magic 8 ball (more smiles). Brian's cousin Paul stopped by again and we learned that Grandma's cousin Bob and his son Mark cruised in from Swellesley on Tuesday night. The emails, Facebook posts and phone calls are too numerous to mention. We are very grateful for all of it.

We called Tim tonight at around 8:00 and found him awake and in a good mood. The good news is that the nurses had him hold the phone himself (first time) but the bad news was that the nurses had him hold the phone himself. Tim learned a new limit as that simple action tired out his arm quickly, he was able to switch hands but we had to have a quick conversation. He did confirm that he got a haircut today, but not the Mohawk that he had originally indicated. Just a buzz. I look forward to that, because there's less hair hiding his handsome face!

At the edge

Hi, Tim. It has been amazing to read your father's wonderful posts about you and your family and Spaulding and especially about how you are doing. I can't wait to read tonight's post. I gather the work is going to get more demanding as you begin to be more upright and begin relearning to walk. I looked up on the web about the new contraption that will help you walk. It seems totally awesome. I look forward to seeing you on it! I am sure you are totally psyched to give it your all and then some. I know you will do amazingly well.

I was working out myself yesterday at just at the edge where I was most challenged and really had to dig to make the next move, I thought of you and sent you all my love and all my effort and all my intensity.

I love you, Tim.
Phoebe

Greetings from #3 Stockbridge Road.....Tim, we think about you every day! It's hard not to when I look at your bedroom window every night as I shut my drapes and every morning when I open them. So it is safe to say you are the last person on my mind every night as I try to get to sleep. We have been keeping up with you through the West Stockbridge grape vine and when we heard the news of how amazingly well you are doing, I had to write and tell you how proud of you we all are and to let you know that we are sending you lots of love everyday! I must also let you know that your lawn has been mowed more in the last three weeks than it has in the past three months... We miss you and can't wait to see you back in the Berkshires.

Hello Tim! We are thinking of you!

Thinking of you Tim!!!

Hello Tim! You've been on my mind a lot lately and I am so grateful for this blog to keep posted on everything without having to bother your mom and dad too much! I am so encouraged to hear about all the progress you are making at Spaulding. I am grateful that you were able to go to such a wonderful place. I am also glad that I will be able to come see you in Boston soon when I am on vacation. I lived in the Boston area for 7 years before moving out to Albany and I miss it a lot sometimes.

I was over at the church today and on the altar table there was a picture of you standing in a tux in front of a car. Someone has been praying for you. Lots of people have been praying for you. I don't know what that means to you, but take all that spiritual energy and somehow let it in. We're all pulling for you and we are all confident that you will find wholeness and happiness whatever may be. We admire your strength, courage and ability to keep upbeat and hope you will call upon all the prayers and hopes for you on days when it is hard to keep it up. More and more blessings to you Tim and to your family.

Shawn

On the Outside, Looking In

So today is the first day that I'm home with Amy remaining in Boston, and it's a little weird. However, I am so swamped with work that the day just flew by. Have I mentioned that Murphy's Law is in effect, and that I am trying to fill two positions on my staff at the same time? Life comes at you, eh?

I had an earlier conversation with Tim, and he sounded great. Sure he missed me, but today was a great day for visitors - two sets from the Berkshires kept him in good spirits all day. In fact he was having so much fun, he forgot to attend a group PT session for arm strength. Today's cast of characters included Bridget, Jacob and Maddie followed later by Tyler, Matt, Nathan and Samantha. Tim is already scheming with Tyler about what he'll do when he finishes up at Spaulding, and I'm pleased to report that he wants to purchase a motorcycle and take a road trip out to the west coast. Tyler's on board, so I guess it's a go! Alrighty, then.

A few minor things today. He wheeled himself to the Dunkin' Donuts in the lobby and used a gift card to purchase a refreshing beverage (hint: Dunkin' Donuts Gift Cards might be a good thing to send or bring him) and take it with him. He is evaluating different beverage containers as to their portability. When I talked with him, he was watching the Sox, and he is becoming a knowledgeable fan - Fred, when you visit, test him a bit.

Later when I checked in with Amy, I learned that in OT, he got a neck massage and learned that he should spend a little more time reclined so that his neck won't get so sore. Also worked some more on moving objects around. PT was a lot of arm work and holding himself up in a sitting position and leaning forward. Tim was put on a blood pressure medication to begin to prepare for the Locomat.

Amy spent some good quality time with Dr. O'Connor and continues to be impressed with his manner and level of caring. She also started to learn a little more about benefits that might be available for Tim as we start to plan ahead for the time when he comes home.

Tomorrow is an incredibly full day for Tim - I guess the first week or so was just a warm up. He'll now get started at 8AM, with stretching at 9 and then 4 therapy sessions and a group lunch social session. I think that now, more than ever, it makes sense to call before visiting.

Thoughts from Tanglewood

Hi Tim-
My name is Eva and I used to work with your Dad at The Red Lion Inn. He used to share some pretty funny stories about you and Jancy...anyway, I was at Tanglewood this week for probably my only visit this year when I heard you had moved some toes!!! As I sat their on the lawn, listening to an all Mozart program, watching my daughters run around the lawn, I thought of you and the incredible love and strength that I know (and I read on the Blog) you are feeling every moment from your family and friends. WHAT AN ACCOMPLISHMENT!!! You should be so psyched for yourself for such an awesome achievement. I know there is more work to do, but it all builds from the foundation of the little things. Remember that the only way to influence your outcome(whatever your goal is) is by focussing on the things you have the power to control, and you have the power to make your choices when you respond to life's events. Stay well, stay strong, and thanks for the Blog.

C'Mon Baby Do the LOCOMATION

More excellent news!!! Good luck this week. You are making such amazing progress. Everyone here in England says: You're brilliant. Well-done! Horrahhh. Keep it up, Tim!!! Has Gabby's cd for you arrived yet? She made you a cd with new tunes from all the English bands you love to watch in person in Hyde Park. Now, there's something to help you do the LOCOMATION!!!

Love, Aunt Carolann

TIM!

TIM! Dude, my parents came to camp the other day and told me about the major improvements you've been making. It was seriously the best news I've heard in a long time. I am so excited and happy for you and know that even though the road ahead may be long and bumpy at times there is no one more primed for this fight. annnnyway, all the camp kids anxiously await updates and we are all thinking of you often. i have a bunch more things to send you (did you get the first couple of letters? i sent them to BMC..my b) but now I have your address so that's word. Tim when you come home I promise you can come to dinner with my family at the village oven anytime you want without intruding. I promise. I hope Boston is cool, and now that you have your sick ride I'm sure you're seeing alot of it. Maybe this wheelchair doesn't have a built in carphone but that's okay.
I hope you see you soon if you'll take me barging into your room? Till then keep improving dude, I can't wait to hear how well you're doing.

-Jess

I Don't Like Mondays - NOT!!

We arrived pretty early today, eager to talk to Drs. O'Connor and LeRoy. We met with them right after their morning visit with Tim, and we heard encouraging things. Tim is now actually able to wiggle several other toes on the left foot, and his triceps are "coming along." I asked what he meant last week when he said "this (leg movement) changes everything," and heard exactly what I had hoped to hear. Now, instead of focusing on rehab to prepare Tim to be independent with the use of a chair and other adaptive technologies, they will concurrently work on developing his walking. Wow.

First thing he has to do, is regain the ability to stand without getting dizzy - another result of low blood pressure. The exercise for that is the Tilt Table, which "stands him up" and puts some pressure on his legs. He's used that before, but the dizzyness was a bit of an issue. If he can't overcome that naturally, they are considering a blood pressure medication. Once he can handle that, Tim will make use of the "Locomat" - for those of you following closely (pre-blog), this is the machine featured in the NYTimes Science section on July 10, and pointed out to us by Drs. Kantrowitz and Crowell back at BMC. The article really got Tim pumped up in Pittsfield, and had the same effect today.

"Locomotion therapy supported by an automated gait orthosis on a treadmill has established itself as an effective intervention for improving over-ground walking function caused by neurological diseases and injuries." More on this including pictures at http://www.hocoma.ch/web/en/products/introduction_lokomat.html We went down to the 7th floor immediately and got a demo from a technician. We're looking forward to a mid-week start.

Tim had an exhausting PT session this morning, is resting now, and will start OT at 2:00. G&G are arriving this afternoon for a visit, because Grandma just couldn't wait til Thursday. Brian heads home this evening.

Completing this entry now from home at One Stockbridge Road. Discovered that while I was driving home, Tim, Jancy and Amy had a Dennis Leary marathon courtesy of West Stockbridge Video (thanks Sven!) and watched the second season (or something) of Rescue Me. Amy says that Tim was in high spirits, and that's a good thing.

Back to work in the morning for me!

to Tim & family

Tim-
I just want you to know that your old ( and I mean dinosaur old) teachers at BCD are sending much love and positive energy. I know how hard you're working, how much effort you're putting forth, and also how many wonderful loving people are behind your every effort.
Your blog is terrific, a wonderful way to let you and your family know how many people are out there for you, without being a pest.
I'm thinking of you all today and everyday.

Katharine Bambery

family matters

Tim, oh powerful one, in your motorized throne at spaulding. You have already accomplished so much, both within and without the hospital walls. There is an entire community of FOT's (friends of Tim), some of whom you may not even know! Your Berkshire family, I guess I need to be more specific, because everyone here is now part of your Berkshire family, so the Kapteyn family is more united than ever, thinking about you, your Mom and Dad, and Jancy (that vegetarian sister of yours), and doing whatever we can think of to send positive thoughts your way. I do want to clarify that I had nothing to do with the cleaning episode, let's be real here. In fact I very happily got dirty on your account. I just want you to know that you are very much here in our thoughts and conversations. And it's all good. Hope to see you soon.
much love, (dirty) Aunt Molly

Oh, Such a perfect Day

Very happy to hear that you are carving out some down time and treating yourselves to some well-deserved creature comforts - pinot grigio, MickyDees, sundowners and views! All that AND! a spic and span house behind you. All of you deserve every deep breath you managed to cram in!!! This is definitely a Sabbath-habit to continue. Lots of love, ca

Sabbath Reflections

In my religion and at Spaulding Rehabilitation Hospital, Sunday is a day of rest. So, we got a relaxed start to the day, and walked down via Charles Street and sort of along the Storrow Drive with the River and Esplanade on our left (along with 4 - 6 lanes of asphalt and a couple of construction zones, but we'll forget about that for now). We basically just hung out with Tim today. He was pretty whupped. Later in the morning, I escorted Jancy Bean to South Station, where she caught a train home. I walked back through the financial district and along Quincy Market, which took just about 25 minutes. Not a bad temperature out, so it was OK. Along the way, per Tim's request I picked up some to-go from renowned restauranter Ronald McDonald and the three of us enjoyed some fine cuisine and conversation on the patio.

The afternoon ambled along - I actually went down to the cafeteria, found a quiet spot and paid my bills - about a week and half late. Good to get that out of the way. When I got upstairs, I was greeted by former West Stockbridge resident Janie Goldenberg and Steve Albert (he's the fellow who got this blog thing up and running, you may recall), currently of Egremont. They were ostensibly in town to visit the Edward Hopper exhibit at MFA, but I think that was a smokescreen put up by Janie, who really wanted to spend some time with Tim. We were having a nice visit and were soon joined by Bershire Bob and Marge Powell along with Jacquay Moffatt, who were definitely in town to attend the Police concert at Fenway. West Stocbridge Rocks!! Tim, as always, was a great visitee and we all had a swell time. He started fading at around 5:00 and we began to get him ready for bed. He wanted to get a good night sleep, after eating three full meals so he could get back into the rehab thing full-tilt in the morning.

By 6:30 or so, Amy and I were out of there and Tim was on his way to Dreamland. We walked back the same way and stopped in a Charles Street packy (it had a nice name, I'm sure) and picked up a couple of bottles or Pinot - Grigio and Noir. At the apartment, we threw open the bay windows, poured a glass of wine, put together a lite dinner, turned on blues night on WBOS and sat in front of that bay window and proceeded to watch the sun go down and the lights come on over Beacon Hill, Back Bay, the Charles River, Kenmore Square and Cambridge (our fair city), MA. This was our first real down time, alone, since July 12.

I'm only telling you this because we spent a decent amount of time reflecting on all the generosity that has been extended to Tim and to his family. If you can't tell by the description above, this apartment is much more than a place to lay our heads, and will be a huge part of keeping our health and focus over the next weeks and months. The visitors keep coming in, as do the posts, emails, cards and letters to keep all of us energized and looking ahead. Back at home, the dog is getting fed, the lawn is getting mowed, Jancy is being watched over, our employers are understanding and the folks in the sales offices at The Red Lion Inn & Porches and in the assessors office in West Stockbridge are making sure that things keep moving forward. We are also reminded that Amy is from a very tight and loving family. Next time you drive by One Stockbridge Road, you might notice some new and beautiful landscaping out in front of the house. Not so noticeable, but equally awesome, you'd find - newly installed ground cover and woody plants along our embankment that Amy had bought just a few days before July 12; a spic and span house, including sparkling clean windows and the notable absence of one old aluminum row boat that Tim pulled out of the Housatonic a while ago to "fix up." While we were briefly home, we had some nice quiet moments and good food together with the same folks who did all that. Thanks (doesn't really convey it) to Peter, Sarah, Molly, Lou, Chris, Phoebe, Katie and Art (special thanks to John, Brenda and Roselle, and if I am missing anyone, I'm sorry).

Well, that's it for now. Jancy is at home cooking up plans to bring some more VIP country folk down the pike for a nice visit tomorrow. Our old Boston friends from the day returned home from vacation and we expect to be seeing a few of them this week.

WOW!

Hey Tim,
I just read about your toe and thigh moving, that's incredible! Spaulding seems like a great place! I'm really proud of you, keep up the great work, you can do it!

Love, Alex

Piggy's Ready for Market

Hey Tim

Having my morning coffee and checking in on you. It's soooooo great to hear the latest. Wiggly toe and two pound weights, WOW!!! They don't "weight" around at Spaulding, eh?! Straight on to the next level. I await further news and remain thankful and ecstatic that you are doing so well. You are working very hard, and doing amazing things. Keep it up!!! We love you lots and lots from the top of your just-washed hair to the tip of that amazing toe of yours, Aunt Carolann