We're Training at the YMCA

Life has been busy in the past few weeks since my husband and I joined the YMCA. They've got him on a three day a week program of weigh training for his left arm---his right one is totally flaccid with not an ounce of movement. And he's doing a series of standing and sitting from his wheelchair, using a weigh machine to pull himself up. While standing, every third time he tries to stand on his neglect leg (right) for a few seconds. Supposedly this will to help wake up the nerve endings. Already, I can see an improvement in his transfers in and out of his wheelchair. This winter after his aorta aneurysm surgery it was taking as many as fifteen tries for him to stand up enough to transfer and today he did it several times on the first try. Strong transfers can make the difference between staying at home or going to a nursing home so this is a worthy goal, believe me.

Don is walking some at the YMCA, too, and also working on leg exercises---some of which are trying to wake up the muscles that can help him kick his right leg out and up. When Don was in physical therapy last fall, they isolated the muscle groups that aren't working for him so those are the ones we're hoping to fire up now. All the "normal" people coming and going from the Y are encouraging and positive to Don as they pass by. It's a heart-warming and upbeat place to go.

When Don finishes up his routine, I leave him at the Y's coffee shop and then I go do the bike or treadmill for fifteen or twenty minutes. The original plan was for me to do the swim classes on Tuesday and Thursday, which are early in the morning before Don gets out of bed. (I loved those classes when I took them last summer.) But so far, our weekly schedules have been so crazy-busy that it just hasn't worked out that way. That will change soon. At least I hope so because I just signed us both up for a sit-and-fit group class, also at the YMCA. It will probably be a little low key for me but I have to be there with Don because of his language disorders, so I decided I might as well take it too. It's an opportunity for him to interact with other people with physical limitations which I figure will be better for him than the exercise.

On the speech front: A month or so ago I mentioned that Don---for the first time since his stroke 5/21/2000---spontaneously tried to spell a word he couldn't say. This past week he couldn't say 'celery' and I ask him to write it and he was actually able to do it without any help at all, misspelled but still recognizable. His language is still mostly nouns-only with a very few two and three words phrases thrown in and virtually no written abilities, not even the alphabet. The professor who oversees the speech group we're still going once a week recommended working on writing, since Don's brain seems to be ready for it. So we're back to doing homework at the kitchen table again.

There you have it, the reason why my real life is taking time away from my virtual life. ©
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Lucky Saturday

Finally, Don is home from the hospital...but with strings. They've signed him up for home physical therapy to get him back to base line. Base for him is independent transfers from his wheelchair to where ever and back. He's not quite there yet---I need to stand by to be sure he's safe---but I'm hoping we can build up his strength rather fast, given that he was doing so well after this fall's round of aquatic pool and land therapy.

I know all the rules that social services has to follow, now, before releasing people from the hospital are well intended, but it's still a scary thought that someone other than me can determine if I'm capable of caring for my husband at home, or not. The nurses at the hospital, in packs of two, all struggled to transfer Don but when I was there I was able to transfer him all by myself. They just didn't know his little quirks. Quirks like how he always has a false start the first time trying. They would tug and pull on his gate belt on his first try where if they'd have just given him a chance to try again, he would have done most of the lifting and shifting under his own power. It didn't do any good to tell them because each day it would be a different set of nurses and aids. And each day they'd fill in that little line on the nurse's notes "moderate or full assist" and thus social services has to follow up with our going home plans. Oh, well. At least he's home and we'll get our lives back as soon as Don proves that he can be as safe as I know he can.

Two Steps Forward, One Back

Don's new carbon fiber brace came on Monday and it was short of amazing how well he could walk in it while getting the final fitting tweaked. His toe didn't drag and get caught on the floor and his heel was hitting the floor first which I haven't seen since before his stroke. He was able to stay standing for longer periods. I was so pumped until…

The next day at home I tried to get Don's foot and his new AFO into his brand new shoe that was fitted at the same time as the brace. I struggled and fumed and tried the shoe horn and a few choice words but I couldn't get them on. Then Don pointed to the other shoe lying on the floor and laughed. I'd been trying to put his right foot into his left shoe. Oops. Finally, we were good to go but it still wasn't easy to get the footed brace into the correct shoe. It will get easier, I'm sure, as I practice but I'm not looking forward to adding this to our daily routine although the trade-off will be worth the effort. Unfortunately, he only had the brace on a short time before he wanted it back off. There's a break-in schedule where you add an hour each day and already we're off schedule.

His new wheelchair also got its finally tweaks on the same day his carbon fiber brace came in. It's got a solid plastic and lumbar cushion for his back which is frustrating the dickens out of me. It has to come off or on each time you fold or unfold the chair when you're out and about town. That means the back pack also has to come off as well. Monday the orthopedics guy showed me what I was doing wrong---not clicking the seat part fully down---so things are looking up. I still don't have the process down pat but I'll learn, hopefully before winter sets in. I can't imagine standing out in a storm doing an imitation of an idiot. As inept as I am about sliding those slots in place it's a wonder I ever figured out sex.

Tuesday I went into the aquatic pool with two physical therapies and Don. It was his last session and the aquatic specialist was teaching both me and the other PT how to work with someone with Don's issues. I plan to start taking him into the YMCA pool between the holidays thus the "Winter of Don" will begin. We're making up our own PT program and will go three times a week. The aquatic specialist gave me all the plastic coated diagrams she's been using with Don in the pool so I'll know exactly what to do. Hopefully, when he has his last land therapy, either Friday or next Monday, the PT will give me some written material as well. I'm excited about aquatic therapy for stroke survivors. Don's definitely made some gains that I don't think would have been possible with just physical therapy on land. If nothing more, just being able to move so much better in the water gave Don a renewed interest in taking part therapy.

I'm a little down right now, though. This morning I got a call about the results of his CAT scan. The aorta aneurysm they've been tracking has grown to 6 cm in diameter and they usually operate at five. It was 4.3 cm a year ago. Two steps forward and one back. Let's hope it's only one back. I'm a little freaked about the possibility of him having another stroke with the procedure. We go to the surgeon's office tomorrow. I'm hoping she can do the stent instead of abdominal surgery. I'm worried and want it over as soon as possible.

But on the good side, we were able to get the new docking arm put on the new wheelchair so I can use the chair lift in the Blazer again! Old lady caregivers shouldn't have to risk getting hernias. We don't have time.

Jean Riva ©

Thursday and Friday in Caregiverville

Don has taken to aquatic therapy like a duck to water. It's an old simile but I can't think of another one that fits any better. Thursday the physical therapist had him in the pool for a half hour laying on his back peddling bicycle style, spreading and closing his legs, kicking like a swimmer and drawing his legs up to his chest and kicking them back out. It's quite amazing to see his stroke neglect leg actually moving so much. For the second half of the hour she had Don standing on his feet doing sideways walking, squats with his back to the side of the pool and some other exercises that works on improving balance. It's quite difficult to talk with Don in the pool where he isn't able to wear his hearing aids and between this session and the last the PT had made drawings and enclosed them in plastic. These visual aids really made a difference. I thought that was a pretty cool thing for her to do.

The physical rehabilitation place we're going to for Don's land and aquatic therapies is sixteen miles out in the boondocks from where we live. On the way home from the place yesterday I missed a turn on a rural road and got lost---sort of. It's hard to get truly lost in a county where all the roads run true north/south and east/west with the north/south roads all numbered in sequence. The east/west roads are mostly named after the lakes they run past. They don't call Michigan the water wonderland for nothing. Lost or not, we ran south as the numbered roads dropped down to where we thought we should cut east for a while. We took one of the few roads that wasn't named after a lake.

That put us on Red Pine Road, a road we'd never been on, and it didn't take us long to figure out why that one road out of a half dozen we'd past wasn't named after a lake. The towering pines along both sides went on for miles and they were so tall they nearly blocked out the sun over head. Red pines are self-pruning and have long lengths of their lower trunks that have no branches and the conifers looked as if they'd been precisely planted six feet apart in rows parallel to and perpendicular back from the straight-as-a-pin road. We figured they could have been part of a post-depression era New Deal/WPA project. Michigan has many WPA "ghosts" lingering about. (The Work Project Administration, under Roosevelt, was designed to overcome the widespread unemployment that nearly destroyed our country back then.) It was neat driving through a piece of history---however the trees got there---as the lowering sun cast a ladder-like pattern across the pavement.

Today I started out down at the YMCA walking on the treadmill. If someone had told me a year ago that I could stand up for a half hour straight---let along walk a half hour on a treadmill---I would have told them they were crazy. Have I said lately how much I love my new knee? Nine weeks out from the surgery and it's the only joint in my lower body that doesn't yell at me, "Jean, you're getting old!" I'm even starting to look like I belong in the gym. Gone are the polo shirts that get too sweaty under the collar. Gone are the wrap-over-the-head earphones. Yup, I'm sporting discreet little ear plugs to watch Ellen or Oprah on the treadmill's build-in TV. I'm also carrying a water bottle and wearing tee-shirts and sweats. The latter attire will be next to go as soon as I figure out where people go to buy those cutesy little workout clothes with the racing stripes up the sides that make you look like you're going faster than you really are.

My afternoon was spent as the Chevrolet dealership getting the oil changed and everything up to snuff for the coming winter months. The heater wasn't working right, the tires needed rotating, all the fluids needed to be checked and topped off, and the computer was telling us that the battery was dead when it's just a spring chicken and was perfectly fine. With all our Blazer issues resolved we finally left the place two-hundred dollars poorer and I had a headache from watching Don bounce off the walls in the waiting area. He had such a good time trying to interact with all the people there and my aphasia decoder ring got a royal workout. Sometimes I'd like to park Don and his wheelchair facing a corner and tell him to "stay!" until I can have two consecutive thoughts of my own.

Jean Riva ©

If it's Thursday, This Must be Aquatic Therapy

Sometimes I think my life is a giant Parker Brothers board game. Roll the dice and move five spaces forward. Draw a card and it tells me to, "Go directly to jail, do not pass Go. Do not collect $200." Then I roll the dice again and I draw a card that says, "Bank error in your favor, Collect $200." When things are going well, why can't we just stay in that groove?

Monday was land therapy with one of Don's new physical therapists and as I suspected before I even met the guy that he is not as good as the one we just lost. That guy was an extraordinarily caring and smart PT. The new guy didn't push/challenge Don to go beyond where he'd gotten to last week. In fact, he allowed Don to dial it down which I know wouldn't have happened if he would have given Don a minute break and then asked him try the task again. For example, last week Don had done five steps up and back down using a standard height step. This week the new PT used a ½ height step and allowed Don to stop at four. Next Monday I'm going to have to step in and coach them both to go beyond where they left off today. I feel like we drew the card that says, "Train stalled on the tracks. No not advance forward."

Tuesday we went to the hearing center to get the verdict on Don's hearing accident on the firing range---to see if the steroids did any good. His hearing did come back a tiny bit but not enough to make us stand up and cheer. The worst of it is that even after turning up his hearing aids, Don is still having a little trouble understanding and the doctor said there could be some nerve damage which sometimes happens with damage due to loud noises. It could improve; it might stay this way forever. Well, crap! He doesn't need that on top of the stroke issues. Upon hearing all this at speech therapy, the professor had Don's student therapist slow things down. "Go back three spaces."

Wednesday we rolled the dice at the dentist office and both came out with good reports and no more appointments for expensive caps or other things that make you think you drew the card that says, "You made a bad investment. Pay the bank half the balance in your account."

Thursday (today) was Don's first aquatic pool therapy at the new location with the new therapist. She does nothing else but work in the water. The pool is a lot larger than the one Don's been using at the other facility but the water is still the therapeutic 92 degree. The whole place made me feel like I was a pizza baking in a brick-lined oven. But the therapist seems to know what she is doing and I didn't get the feeling that she is going to baby Don the way the Monday land therapist did. "Move forward two spaces."

Friday is the bi-monthly fish fry at the old people's club which---my gosh---if I even thought about cutting out of our schedule---which I did---it would be mean we drew the 'divorce card' and I'd have to pay the board game a huge, ugly fine. I had hoped for a quiet day at home. Oh, well, I just drew the 'weary traveler' card.

Saturday is the disability deer hunt! I got a call from the guide yesterday who will be working with Don and he wanted to know how many deer I wanted Don to bring home. I didn't realize that here in Michigan he could get as many as five doe. Holly Mother of Mary, Don better not shoot more than one unless he agrees ahead of time to donate the meat to the hunter's soup kitchen project. I do not want to draw the card of life that says I have to buy a deep freezer to house a bunch of meat I don't want to cook.

The guide said that when they set up the deer blind, they saw seventeen deer milling around the area and he thinks Don's chances of getting one are excellent. The only down side---at least for Don---is that the landowner only wants doe harvested from his property. I understand that's kind of common for people donating land for the disabled to hunt on but who will be charging other hunters to use once the regular firearms season opens. I'll blog Sunday and let you all know how the hunt turns out. Don will have a good time, I'm sure, even if they get rained out and have to hang around the deer camp all day drinking coffee and eating hot dogs. For him, male bonding time has been almost non-existent since the stroke. The hunt is like drawing the much sought after card, "Advance to Go. Collect $200."

Jean Riva ©

Speech Therapy, Physical Therapy - Bad & Good News

To keep Don in aquatic therapy we have to switch rehab centers because the PT that Don has been working is transferring out of town and no one left is strong enough to handle Don in the water. This presented a dilemma because the new center only schedules appointments in the pool on Tuesdays and Thursdays, the same days that Don goes to speech classes. So yesterday I talked with the head of the Speech/Language Pathology Clinic at the college to find out if it would count against Don's chances of getting invited back next semester if he drops out of Thursday group classes until after Thanksgiving. (Our insurance coverage for PT should run out about then.) The good news is that it won't factor into their decision if he drops out group speech therapy, but the bad news is that that decision has already effectively been made.

The professor said that the reason they have Don paired with another client on Tuesdays---instead of the one-on-one speech therapy he's been getting up until this fall---is because they are preparing them both to get discharged from the program. I don't know if it will happen at the end of this semester or in the spring---I was afraid to ask, or maybe I wasn't ready to hear the answer yet. But either way, an end of an era is coming. I did ask if Don would be allowed to return to group therapy for as long as he wants to keep coming as I've always understood to be true for all their discharged clients. She said, "Of course he can" and she said that they are going to expand the group classes. From that remark, I'm guessing there will be a number of clients terminated at the end of this or the spring semester. There is quite a group of them who've been in the program a long time. None as long as Don, though.

On the way home I told Don what the professor had said and I added that this doesn't necessarily have to be a bad thing for him, that we can change our focus to improving his physical health. He can join the YMCA with me and we'll be free to get involved with fun activities at senior center. I asked him if he was disappointed with the news and his answer was, "No." Since the first of the semester, we both sort of saw this coming---I even verbalized my hunch that they were getting ready to discharge him. But I really thought he'd be more bummed out about it. He has not been happy about sharing the therapy hour and from his reaction to this news, I'd say the college's experiment to prepare clients for discharge with this step-down semester is working the way they want it to. With past clients who've been discharged cold turkey, it's often a very difficult and depressing transition for them. No client who is doing well wants to give up a good thing.

Today was Don's last land therapy with his current and great PT. It was exciting to watch. At the Monday land session Don did three steps up and down and this time it was five times up and down before he wiped out. All of them were stronger than his first attempt on Monday. There is one task he has do while laying on his back where Don pushes with his neglect leg as the PT keeps pressure on his foot with his shoulder. The PT said he was surprised at how much stronger Don's gotten in such a short time. I could even see it. What was interesting, too, is on the second set of pushes we told Don to talk to his neglect leg, tell it "MOVE!" When he did that with each push he got much more power behind his actions. God, I hope he gets good PT's at the new location. I can actually see Don not being so wheelchair dependent in the future.

Jean Riva ©

Aquatic Therapy with a Great PT!

Aquatic therapy went well today and had the twist of three students from the high school there to observe. So the PT did a lot of explaining about what it entails to get someone like Don walking again and how the brain has the ability to reroute itself around the damaged part to make new connections, even as far out from a stroke as Don is. He talked about tone after a stroke and how the body has a hard time letting the muscles relax on the paralyzed side (that wasn't his exact terms, I'm paraphrasing). He explained that Don's brain has somehow been able to find a way to work around the tone recently so that it is no longer holding him back from learning how to walk again. Don, he said, it very weak on his right side from the muscles not being used for so long but he's super strong on his left. He told them that insurance companies were the biggest downside of being a PT because if they had all the time they needed to work with a client, they could get more people like Don functional again. He said it's a constant battle to try to get their clients more paid therapies. Amen to that.

At one point during the session the PT had Don lying on his back with the help of two pool noodles, kicking his legs and bicycling. Boy, did he love that! He was making sounds like a contented kitten. At another point the PT had Don sitting on a ledge in the pool and he put a paddle with holes in it in Don's left hand and had him move it back and forth. He was watching to see if his right, neglect arm would mirror the pattern as we had Don talk to his arm and tell it, "Move!" You could barely see the movement but it was there! He had a medical term for what was happening but I can't remember it. It's so strange to think of Don's arm has having some imperceptible movement going on when it just hangs down like an arm on a rag doll and has been for 7 1/2 years. But he's been able to feel changes in the arm for the past six (?) months or so. He can't talk, of course, to explain how it feels but he'll pet his arm sometimes and make 'hummm' sounds like someone would do when they taste something good.

I am so unhappy that we're losing this PT after Friday! He's getting shifted back to another location 45 miles south of town. I guess he was just filling in for someone on maternity leave. We may have to drop out of group speech class to keep Don in aquatic therapy plus go 15 minutes north of town to another location. There is no one at the place we are currently going who is both strong enough and especially trained to work with stroke patients in the pool. I'm going to talk to the professor at the college tomorrow to see if it will count against Don for getting invited back next semester for the speech clinic if he opts out of the group class for the next six weeks. The rub with going to the other location is the stroke pool therapist only works on Tuesdays and Thursdays, the same days as Don's speech.

Jean Riva ©

Stepping Up to a New AFO

You know it's a sad state of affairs when you can say that flipping a mattress was the highlight of your Sunday. Okay, flipping two mattresses, that's a little better but it's still pathetic. Or is it? We all need a stop-and-smell-the-dust-mites kind of day once in a while.

Monday was just the opposite from Sunday with several things happening to thrill and excite. Okay, not thrilling as in a roller-coaster-at-Disney-Land kind of way, but thrilling in the stroke recovery world. We started the day with a physical therapy session (on land this time) for Don. The highlight of which was Don being asked to step up and back down on a step that was placed in front of a grab bar. This was a two man operation, to help Don the first time. He came close to wiping out and falling and would have if not for the fact that I was there with his wheelchair to catch him on his way down to the floor. His therapist had set a goal of three steps up and down but after that first attempt Don was a little scared to try again. But trooper that he is, after a little rest he was good to go again and the improvement between the first and second attempt was dramatic. By the third step up and down, Don was able to do it all on his own power with minimal help from any of us. Now, if that isn't something to thrill and excite I don't know what is.

In the afternoon Don got casted for a new AFO. When we told Don's PT this morning where we were going to get the AFO made he got puffed-up impressed and told us that the man who owns the place is known world-wide for his innovated carbon fiber braces. He holds the patent and people fly in from all over the world to get them made from him. And here we picked out the place because it was close to home. Who knew our good luck would come to this? What makes this AFO different from the old plastic type Don had before is that the foot part has springy action that is suppose to help with drop foot and the carbon fibers are, of course, very light weight. The top part that goes around the calf is one continuous piece; you slip your foot down through the opening in the top to put it on and it's suppose to help you to stand up straighter. We'll see. It's not going to be a put-it-on-oh-it's-a-miracle kind of thing. We'll have hard work to do---the PT, me and the brace guy---to get Don's calf muscles stretched back out after several years of atrophy.

This orthopedics place also owns a Giger biofeedback machine that the owner has offered to let our PT use on Don free of charge. There are only three in our town of well over 600,000 people. If we can pull this together I'll blog more about the technology later on. It looks interesting!

Jean Riva ©

Shout it Out!

My husband worked nights his entire adult life and it's still hard for him to get up for early morning appointments. But beggars can't be choosers when you need a doctor's appointment so we were up before the birds came down for their breakfast. We were just walking out the door when the audiologist called and wanted to move our appointment two hours back or two weeks out if that didn't work out. Well, crap! We went for door number one and finally got to see both the hearing doctor and the audiologist. After two and a half hours in their office we walked out with both an audio and a cognitive test under Don's belt and a prescription for a steroid. The bottom line is they don't know if his hearing will return, or not, but if it doesn't come back then they'll turn his hearing aids up at his next appointment in two weeks. God, I can't imagine shouting at him for two weeks!

The doctor, before giving us the prescription, was really starting to tick me off. It seemed like he wanted to hang the hearing issue on a cognitive hanger because of the stroke and he insisted on the cognitive test. So Don was put in a sound proof room where he couldn't read the lips of a person on a microphone who was asking him questions. Anyone who knows anything about Don's language disorders knows he can't come up with most words at will and I was afraid he'd fail the test, but he scored an 80%. The audiologist, who knows Don well---she's been seeing him for five years---sided with me that Don was no different cognitively now than when she saw him three months ago to fit him for his new aids. Finally the doctor explained that the steroids can have some nasty side effects with someone on Coumadin and he didn't want to give them to Don without first making sure the hearing loss wasn't caused by a brain disturbance instead of the mishaps on the firing range last weekend. My blood pressure would have liked it better if he had explained that in the beginning instead of letting me do a slow burn all that time.

After the appointment ended, we just barely had time to make it to the physical therapy building on the other end of town for Don's aquatic pool session. However, after seeing the nasty cut on Don's arm they decided it was too big and bloody and they'll have to while until it scabs over for him to get in with all the pool chemicals. He cut his neglect arm yesterday on the metal edge of a table the Mexican restaurant. Ouch! It's an inch and a half long and over a half inch wide, sliced the skin right off. Other than that, physical therapy went well. The PT spent most of the time with Don on a table and having him doing a variety of leg movements with the PT's help. It was hard stuff even for someone who hasn't been sitting in a wheelchair for the past 7 ½ years. But Don hung right in there---red face and all. People on the next block could probably hear me shouting out "Breathe, Don breathe!" in his ear.

Jean Riva ©

Old People on the Move...

Anyone who thinks that old people don't do anything but sit at home feeding the birds and hoping a telemarketer will call so they'll have someone some one to talk to should follow us around for while.

Yesterday was one of Don's blood lab and physical therapy days. After 7 1/2 years in a wheelchair, we were lucky to get his doctor to write a prescription to try aquatic therapy. The goal is not so much to get him walking again but to get him stronger so that he doesn't lose his ability to transfer on his own which has been on a downhill slide lately. If he loses that then life as we know it would change drastically. Don's only been to three therapy sessions but already I can see a difference. Yesterday, though, was rather comical due to Don's hearing issues caused by going to the riffle range over the weekend. I had to keep my lips within inches of his ear to repeat the instructions given by the PT. Thankfully we were able to get an appointment at the hearing center for tomorrow. I'm losing my voice from shouting.

After dropping Don back home this afternoon, I barely made it to the YMCA before the working people filled up the place. After a little treadmill and biking around and wishing I could be buff like some of the young ones in the place I was back home to get dinner.

This morning, before Don got up, I was back to the Y for an arthritis class in the pool. After a bone density test this summer, I was told I have the backbone of a twenty year old and the hips of an eighty year old. Yikes! So I've joined all the other out-of-shape seniors in the neighborhood who are trying to hold off the marching of time with a few do-se-do's in the pool. Gosh, that class was fun starting with the first bars of "The Bugle Boy from Company B" to the last notes of Jimmy Durante singing, "It's important to make someone happy, make one person happy, and you will be happy, too."


After my class I was back home to help Don in the shower so we could go off to one of his twice weekly speech classes. He's been going since his stroke (private pay) to a speech/language pathology clinic at a near-by college.

On the way home we stopped for what was suppose to be a quiet little meal at a Mexican place. A tipped-over full glass of water, a salsa decorated shoe, an orange stained pant leg, a bloody arm and a thousand napkins later---oops!---I was ready to come home and chili out with a few Planters peanut butter cookies and a cup of Constant Comment. Some moments just call for some comfort food. And Don? He's asleep in his Lazy Boy. Our old-people-on-the-move routine worn him right out today.

Jean Riva ©

Detailed descriptions of Don's physical therapies can be found at 'My Yahoo 360 Page' linked in the column to the right. Once there, click the tag cloud 'aquatic therapy.' Documentation of several years of past speech classes can be found at the 'Aphasia Decoder's Diary' also linked in the column to the right.