end of therapy

Today we ended the last of the therapy…on my shoulder. After seven months. In this case, not because it is totally 100%, but that there is little more to gain. The problem just has to settle down on its own.

But seven months is nothing. I can drive, think, walk and talk… what’s to complain about? For many seven months is just the beginning. But I will mark the milestone and get on with my life.

Not that I will forget, or forget the many who are just entering that dark tunnel.

winter of our discontent

Winter has settled over the land. With a vengeance. Wisconsin on our visit last week was below zero.  Here in Columbus the snow has blanketed the ground for a full week, with several more inches due tomorrow. The sense of Japanese art, of fields of flat tone, are everywhere.

While we hustle into our coats and scarves, we think of how much of a winter this time has become in America. When do we start spending  here rather than on foolish wars? When do we get people back to work?

Surviving

This comes from my friend Craig. Rather than put  it up as a comment, I believe it deserves its own post.

“Chuck Close, whose work I greatly admire, suffered some sort of disabling neurological condition similar in effect to a stroke  (diagnosed a rare spinal artery collapse-JC). He speaks of the rest of humanity as the “temporarily abled” as opposed to the disabled, for we all eventually succumb to the erosion inflicted by the tides of time. His condition has ironically, perhaps, pushed his painting into an almost transcendant realm which I doubt it would otherwise have achieved.  The ultimate test of character is how well we deal with the challenge. Chuck has done about as well as anyone could posssibly hope to do, as you will see if you can get your hands on the movie made about him not long ago. It is a two hour documentary by a woman who moved into his studio for something over two months and filmed him painting a painting from beginning to end…along with interviews of other artists, curators, etc. A marvellous document of art and the power of the human spirit.

“The other story comes from an elderly Hungarian couple I met in Toronto. He grew up in considerable privilege in Budapest – a private railcar to travel to Vienna for the opera, for instance. He was jewish and when the Nazis came the family was forced out of their home and their factories were expropriated, though he was kept on to continue to run them. He recounted how he was taken to a prison one day, brought into a windowless room with one light bulb hanging from the ceiling and with a guard was left standing before and man at a desk, Goebbels I believe – one of the names you would know. This fellow eventually looked up and looked my friend over for a long time without saying a word. Finally he asked, “Aren’t you afraid?”. To which my friend replied, “I see before me an obviously well educated and refined German gentleman, therefore I have no reason to be afraid.” The “gentleman” laughed, told the guard to bring another chair for his “guest” and then leave. The two then got down to business. The head of the SS was shaking down the well to do families and wanted their Swiss bank acct. numbers. My friend denied any accounts and still managed to survive the Germans and the Russians, as did his wife, who had her own stories of Hell. At the end of this narrative she said to me, with such controlled force of will that the words were like hot metal struck by a small sledge hammer, “All that is expected of us is that we must never, never, never give up.” They eventually emigrated to Canada where he was given a job as janitor in a school. He went on to build from scratch one of the largest lumber companies in the country and to live in the style he was born into.”

setbacks

We all deal with setbacks in our lives. In fact, we are in large part defined by them. Some are the results of our actions and decisions; some are the winds of fate.

Recovery of any sort is subject to setbacks. A linear progression of recovery from stroke to wellness is rare. Each of us can describe a different set of them, and no two strokes are alike. You cannot anticipate them specifically. That is their nature. But you can anticipate that you will have setbacks. In my case, drug reactions and orthopedic issues with my shoulder were the issues. In another case I know, getting through a re-education course for math took a huge amount of work. Falls, illness (which in my view is separate from a stroke), losing the gains temporarily of muscular control that had been achieved, a second (or third) stroke, are all setbacks to be overcome.

And then there is the mental side. You have to keep up your mental attitude. A decline in your attitude alone can produce a setback. Suddenly it is just too much to do the work. It all seems dark. All seems hopeless.

You have to find it within yourself to continue. Continue, and believe. Everyone – stroke victim or not – has to deal with setbacks, in every part of life. Stroke is just more obvious and immediate for a long time.

Believe you are not alone. Believe.

Happy Holidays

Finally we see the sun in Columbus. A full week has passed since we last saw blue sky. We watched the huge rainstorm pass east and west of  Columbus without getting hit by it in any big way.  Three days separate the images…12-23 on the left, this morning on the right.

stroke and touching

I promised a separate post on touch. This is the first but won’t be the last.

I am totally amazed that touch is not a HUGE part of stroke therapy. The therapists follow the western medicine rule books and move the leg this way and that, and make your arm exercise this way or that. But they rarely TOUCH.  Instead, medicine is conducted in a techtronic way… You get your meds, you get your food, you get your workout. But never ever touched. It is inhuman. And stupid. And counterproductive.

A stroke is about the rewiring of the brain. Sensation – if the patient has any or the potential to have any – is a powerful tool in rewiring. Even the holding of hands can be theraputic in the real, actual sense, not just mentally feeling better.

Manipulating a limb, massage, stroking, even simple touching, are CRITICAL to recovery. I had only one therapist, Tami, out of nine, and zero nurses out of fifteen or twenty, who got that. Tami would work my hand, wrist, elbow and shoulder. It helped me remember where the hand is and how it feels. It loosened up my shoulder, and helped me remember how it is supposed to move. I think she was hugely important in my being able to type this. I believe someone touching my foot after my stroke would have had a huge accelerating effect on the recovery of my walking ability. It never ever happened. I got better on my own, but it took a hell of a lot longer than it might have.

A lot of it is NOT “trained” touch that is needed… It is the touch of healing. Every mother knows about touch. Touch trains little hands to work better, it soothes a child’s “owies”, it connects a mother and child. Today the medical professional don’t WANT to be connected in ANY WAY with a patient – “not professional” – and they are afraid they will lose their “clinical” points of view. But healing, especially of stroke, REQUIRES involvement. “Oh, THAT is where that muscle is…” And touching takes time, and time is profit, and what is American medicine about if it is not about profit? Healing? Oh, that is a byproduct, that is what we sell, but it is not the purpose…

Not a single nurse ever touched me -  not even my hand – more than was absolutely required. It is like I was unclean, or from an unclean caste. Or that I was carrying the ebola virus and their eyes would start bleeding if they touched me. As wonderful as the nurses were, not one – not a singe one – ever put her or his hand on my arm to connect with me while we were speaking, for example. It does not have to be elaborate.

Nurses and especially therapists, particularly those who work with stroke patients, should be required to get training in touching – massage, eastern medicine or whatever.

All over the world (outside of the US) touch is part of “healing.” China, South America, England, even the Eskimos, use touch in healing.

Touch heals. It does. But not in America.

not a joiner

I am not a joiner of things nor a dweller on a past, whatever the past might be. A friend of mine had surgery for breast cancer. She was offered support groups to join, etc. and turned them all down. “It happened to me. So be it.” I feel the same way.

However, I am writing about stroke – I guess “dwelling on it” – for a couple of reasons.

If I can educate people about the warning signs, therapy, etc. then it has been worth it.

Also, stroke is an ongoing event. It changes what you can and cannot do, it affects everyday. So writing about it is as much the present as the past.

Groups can be very helpful. Being alone with a catastrophic event makes it much harder for some, and a group can alleviate that. What to do – the nuts and bolts – can sometimes be gotten in groups that cannot be found in other ways.  Each person has to decide for him or her self.

Dream Breathing – book now available

My new book of verse , Dream Breathing, is now available at

https://www.createspace.com/3411334

Enjoy!

post-stroke therapy

Okay, let us assume you or your loved one is one of the lucky ones, and you can still remember who you are, perhaps you have physical feeling on the affected side,and that you can swallow, maybe even speak. What’s next? What can you look forward to?

Therapy.  Lots and lots of therapy. It rewires the brain. No, really. The brain finds new paths to get the same command through. You may have heard this. But what is the reality of how you go about achieving it?

There are several different kinds of therapists you will have on your team. Physical, Occupational, and Speech therapists are probably for most survivors the biggest.

Physical therapy is really mostly about walking. Get your balance, move the silly foot that won’t respond, remember after a while how the knee is supposed to work. Straight forward area, for the most part, but far from simple. Many survivors will never be able to walk again… or if they do they will have permanent limps. Remember, as I said before,  stroke is the number one cause of long term disability in the United States. I was very lucky. On the second day after my stroke I moved the toes of my right foot. Four months later I was walking (but when I get fatigued I still limp). I had great physical therapists, I had strong motivation, and I was lucky.

Occupational therapy has two big areas. The first is getting the hand and arm to work… no small task. I remember being incredibly frustrated by a stack of small cones I was supposed to pick up one at a time and stack six inches away. The other part of occupational is really that – occupational in its broadest sense. What did you do before? How much of it can you do again?  How do you  go to the bathroom? How do you eat? How do you get dressed? (Yes it is embarrassing but live with it.) How do you move safely around your room? How do you get in and out of a car safely (or at all)? If you should be so lucky, how do you drive a car? What physical skills do you need to resume your career (whatever it was)? How do you cook? How do you do the laundry? Many will have only partial use of the arm. My OT, Molly, told me only a very small percentage of stroke victims get the use of their affected hands back. So many have to learn all of the above with one hand! If you are a caretaker, here is an exercise for you. let one arm dangle at your side. Don’t use it at all. Now put on a T-shirt without using your arm. You will be able to do it, but it takes a lot of thinking, contortion, and energy.

The third area is speech. “Speech” is really a misnomer, although it does deal with forming words and communicating, which is often a serious hassle. But it is also about swallowing (yes, we can forget how to swallow! It is very important – and a learned skill when we were babies!) and thinking and problem-solving. Coming out of a stoke we are very confused. Keeping a checkbook, understanding a bill, scheduling your day can be serious obstacles. We have to rewire this part, too. Remember that strokes can hit any part of the brain, and will have different effects on individuals. No two strokes are the same.

So if you or your loved one is in a rehab hospital or facility these are the three areas you can expect. but there are a couple of other things you should be aware of.

BE READY TO BE BORED. An “aggressive” program will give you three hours of therapy a day. Less aggressive programs, even less. you have your meal trays three times a day and three hours of therapy. You probably won’t be able to – or want to – read. Television is too much noise. Have you husband get you an iPod, load it up with the London Symphony or Green Day or Enya or Carrie Underwood, and put it close to your good hand.

TOUCH YOUR LOVED ONE. This is done way not enough.  This is such a pet peeve of mine I am going to make a whole separate post about it. But for now… Touch the affected arm or hand. The brain is rewiring. Help it.  Stroke the shoulder or the knee or the foot.

BE PATIENT. It is slow. If you are like me, way slower that you think you can stand. But you will have little achievements. Like wiggling your toes.  Or standing up. Or going to the bathroom yourself. Or raising a glass to your lips. Celebrate them.

Good luck. Whatever level you are able to re-achieve is better than nothing. Every day is incrementally better than the day before. And finally, remember you are not alone. There are a lot of us out there.

From the National Stroke Association’s website (link on the right):

• 10 percent of stroke survivors recover almost completely
• 25 percent recover with minor impairments
• 40 percent experience moderate to severe impairments requiring special care
• 10 percent require care in a nursing home or other long-term care facility
• 15 percent die shortly after the stroke

Winter

It is not like I don’t know winter… after all, I grew up in Wisconsin.

After twenty years in Southern California, winter had lost its classic meaning. Winter meant clearer skies, ever so slightly cooler temperatures and the chance – just a chance – of rain. In fact, I played more golf in winter than summer because the temperatures weren’t so hot. I went to the Huntington Pier every Christmas Day. I trimmed my roses back the day after New Year’s.

But now I am in Columbus… and winter is finally coming, with rain mixed with snow in the forecast and the light entirely grey. The light is interesting, as is the near-monochrome landscape of brown and muted grey. The trees are all bare, though some of the grass is still inexplicably green. This is all new to me – or rather, newly remembered.

The change from fall to winter seemed very swift, coming from a nearly seasonless land. Suddenly, it seemed, all the leaves were gone and the cold arrives.  Perhaps it is just because I am older now, and care a little less, but the change in seasons is interesting rather than depressing. I think of Japanese Haiku and look at the bare tree forms.