Mid-Summer Update

We went out for pizza with old friends last night which was both a happy and sad time. Happy because it's always great to see old friends but sad because it accentuated yet another growing post stroke problem---Don's isolation. His ability to stay focused on our group and participate in conversation was severely hampered by the hearing loss he received last fall at the Disability Deer Hunt Sight-in Day. A volunteer helping Don didn't make sure he was using ear plugs so now in places where there's a lot of background noises, he can't follow the thread of conservations. Even without background noises it can be a challenge requiring me and others to repeat things three or four times. Part of that is aphasia/language processing issues from the stroke but most of it is that damn hearing loss. The audiologist says there's not much you can do about that type of hearing loss because it's to the center nerve and turning up the aids only makes the background noises all the more annoying.

It's sad because the stroke itself robbed Don of so many opportunities for social interaction like not being included on house party guess lists because the location aren't wheelchair friendly or because old activities we used to do with other couples are no longer a commonality that bind us together. Since the sight-in accident Don can't even successfully "talk" on the phone anymore. In the past he used to enjoy listening to friends and family talking about their lives. Now, he ends up putting the phone down about half way through the call. Thankfully, he seems to be handling his growing isolation fairly well but that doesn't stop me from feeling badly for him. He used to be so engaged with people both before and after the stroke until recently. It's like watching a falling star and holding your breath knowing eventually it will burn out.

But we're keeping busy, almost too busy for my tastes. We're out of the house every afternoon doing what we can to enrich our lives---shopping, going to local parks and free summer concerts, going to restaurants, art shows and the YMCA, giving the new puppy playtimes and taking him to obedience classes. It's easy to keep busy in the summer.

I'm taking two aquatic pool classes when I can fit them in. One is jazz dancing. The instructor actually incorporates dance steps from all the decades of my life and they bring back some great memories, listening to the music that goes with the exercise. The instructor for the other class combines boxing, kick boxing, cross country skiing and belly dancing moves. When I get finished with that class I'm energized and ready to take on the world. Where's my Wonder Woman costume when I need it? I could wear it home and feel like I'm appropriately attired. But as the day wears on my aches and pains remind me that I'm still an old woman. Such is life. We dream of Nirvana and even achieve it from time to time then we slip back to where we began leaving our Zen living-in-the-moment pleasures behind. ©

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Summer In Caregiverville

The days of June have blended one into another. Finally some warm days to alternate with the rain we've been getting have come to our corner of the world. The beginning of summer, for us, is marked by the first of the Blues in the Park series and by the start-up date for the Farmer's Market both of which happened this week. Summer is here and we don't even have plans beyond attending these two weekly events, raising a good puppy and contracting to have a couple of rooms painted. I should plan something beyond the normal rhythms of summer but between the cost of gas and the cost of getting older I don't seem to have the desire to seek out any more fun under the summer sun. We'll probably throw in a couple of art shows, a small town fair or two and call it good enough.

The new puppy, Levi, sounds like a herd of buffalo thundering across the carpeting as I write this morning. He litters our house with a dozen stuffed toys plus chew sticks and three balls. Several times a day I pick them all up and put them in his toy box in the kitchen and after nap times he gets them all back out again. Even Don is getting more puppy related exercise. As he makes his way across the floor in his wheelchair he's learned how to kick and pick the toys out of his path. Annoying as that must be for someone in a wheelchair, the puppy has been worth the effort. Don and Levi have already become barking buddies, much to my displeasure. The puppy is a schnauzer, a breed given to barking too much if you don't nip it in the bud. But what are you going to do with a guy with very little language at his disposal who enjoys interacting with the dog in their little joyful bark-offs? You make a half-hearted attempt to discourage the barking but you know that neither dog nor man will listen. I bond with Levi through training, exercise and feeding. Barking like two wolves in the wild is their bonding thing.

So I work at training Don not to bark at Levi when he's in the middle of transferring in or out of his wheelchair for fear the dog will bounce on him and push him over. It seemed to be Levi's favorite time to start their barking ritual. It's likes he's saying, "Hey, you're on your feet anyway. Come play with me." We've worked so hard at getting Don's transfers strong, dependable and independent again. Since last fall, really, and now that we've been going to the YMCA and working out, his transfers have finally become all three of those things and if not for the puppy I wouldn't STILL be on stand-by duty during transfer times. Life is full of ironies, isn't it? ©

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Stroke Anniversary Number Eight

May 21st, 2008 will be the eighth anniversary since Don's massive stroke, a stroke that changed the direction of our lives as strokes do for most people. This year, to celebration the fact that my husband beat the prognosis of two neurologists and is far from being “a vegetable for the rest of his life,” as they predicted, I'm planning a day trip to Lake Michigan. There's a quaint tourist town on the eastern shoreline that we've both been going to since we were kids, long before we even knew each other. A ship that once took me on my high school class graduation trip is docked there, a maritime museum now. For some reason it gotten smaller as the decades went by. I can't imagine spending a week in one of those tiny cabins now, especially with Don's wheelchair in tow. Perceptions changes over a lifetime. Back then, I thought we were traveling like the 'upper crust' of society.

I suppose some people think it’s strange to celebrate a stroke anniversary, but it could have been so much worse and that ‘could have been but wasn't’ is really what we celebrate. Yes, Don is still wheelchair bound and can’t say more than a handful of unprompted words but he is cognitively almost back to his pre-stroke days and we can still find meaningful things to embrace and keep us busy from day to day. But more than any other benchmark, the stroke does not take center stage in our lives like it did in the first few years when therapies, changing priorities and goals, and downsizing our lives filled every waking moment. We arrived on the other side of the firestorm several years ago, rebuilt our lives from the ground up and now enjoy the fruits of our hard work.

I still visit the stroke supports sites from time to time but the strong connection I once felt there is holding on by a very thin thread. And that is a good thing in the recovery world. After all, it's the goal of any support group to help people to get their lives back on track and living in the real world again, however chanced and challenging that may be. When a member of a support group no longer needs to get or give advice or compare their battle scars the group has been successful in its mission.

One thing I still try to share with people new in the stroke recovery world, though, is the concept of acceptance. Some people mistakenly think that if they accept their stroke limitations---or those of their spouse---that it's akin to surrender and giving up. Nothing could be farther from the truth. Acceptance of what has happened gives you the power to fight your best fight for recovery. It's when people live in denial of their fallibilities or they play the blame game, mad at God and everyone else in their path, that they defuse their power because that denial and anger eats up an enormous amount of energy and time. Acceptance gives it back so you can redirect your resolve to places that will make a difference in the quality of your life.

Don and I have both worked hard over the past eight years to overcome "the vegetable for the rest of his life" prognosis and he's come a long way cognitively, physically and communication wise since the first few years out from the stroke. (Note: communication is more than just spoken or written words.) His ability to be good natured and happy despite his disabilities inspires people where ever we go. I'm proud of him and I think he is proud of me as well. Yesterday at the YMCA while we were both working out we were surrounded by young, healthy people Don looked at me with deep emotion in his smoky-gray eyes and said, "Me cool."

Those of us who live on the Planet Aphasia know that reversing relationships is common with speech disorders, so I pointed to him and asked, "Don is cool?"

"No," he replied and pointed to me while saying, "Cool" again.

"I'm gray haired, old and full of wrinkles and you're surrounded by beautiful young people and you can still say I'm cool?" I teased back.

"Yes!" he answered with gusto to which I gave him a rare public display of affection and then we went back to our workouts. Perception, as I said up above, truly does change as we march through our lives. When you're young and emerging into life I doubt anyone would label an old person working out in a gym as "cool." It's only through the grace of God, love and admiration for our fellow man that we learn to look past the exterior of anyone---disabled or not---and see the spirit within. ©

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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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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 ©

Joy, Algaecide and Pee---

All the instructors for the YMCA exercise classes in the pool have different styles. Today was my first class with a woman who truly had a unique manner of leading senior citizens. I came home feeling like a cross between Floyd Mayweather and a Nordic ski champion. Yes, I spent an hour in the pool alternating boxing foot work and jabs with ski scissors and extensions. I got out the pool feeling like I could kick ass with the best of them and look outdoorsy healthy while I was doing it. No kidding, if I was younger I'd seriously think about hanging a punching bag in the garage and try jumping more than an imaginary rope in the deep end of the water while hanging from a pool noodle.

Hanging in a Easter egg colored noodle today, it briefly crossed my mind that those noodles are straddled by a lot of crotches but I figured that crotch kooties can't live long in water that is so strong with chemicals that a soapy shower can't wash their smell off my skin. And to think in my hay days I used to smell like Jean Patou's Joy perfume. "Jasmine, rose oils and other classic fragrances"---yes, so much better than the bouquet of chlorine, bromine and algaecide. Except for that brief moment of paranoia, I had a great time at my pool class today. All caregivers should sneak away in the wee hours of the morning to do something for her or his self. Remind me of that next winter when the Michigan snows are urging me to stay snuggled deep in my blankets.

Don started the afternoon out in the speech clinic waiting area the same way he has for the past few years: complaining to anyone who will listen to his aphasic tirade about a neglected plant that he wants someone to save from the sins of under fertilization and sporadic watering. It's not for lack of trying that he hasn't been able to convince someone to cut the thing back and give it a new start.

After the class, we were suppose to go out for dinner with four other couples---we go the first Thursday of every month---but Don had a run-in with his urine bottle before leaving the college and I was lucky enough to catch one of the other couples in the parking lot so I didn't have to go all the way the restaurant to let them know that we wouldn't be dining with them. The spouse of Don's classmate told me to just blot Don off, spray some perfume on him and go anyway. I thought about it. I really did. But at what point do you start throwing away a person's dignity? So I trusted my better judgment, took Don home, stopping for take-out oriental along the way. It was a good decision. By the time we got home he smelled a little ripe. Memo: start carrying an extra set of clothing in the car.

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.