Friday, January 9, 2009

For Better Or Worse with Parkinson's Disease

So we all know that Steve has PD

A couple of weeks ago I asked Steve if I could write an entry for this blog because I thought it might be helpful to share his progress from the other side of the room. I'm glad I waited because there has been a change very recently which has been a big boost to my morale.

One of the problems with being the spouse of a PD patient is that your role changes subtly at first to worried carer, then to watcher of symptoms, you develop your research skills in areas you never studied in school. You become an exercise nag, the assumer of household tasks, the valet, then the voice on the phone, you become under-protective and overprotective. Since Steve is only in early stage 2, I don't know as much about the next roles from first hand experience.

These are not play roles, they are quite real. All the while you know that it is the essence of that person which you love and swore to stay by in sickness and in health. And here it is...and sometimes you are not quite sure who you are because your needs have to change as that disease progresses.

Sitting at the computer, everything about him looks normal, as normal as say 15 years ago. The glasses are a bit different as Steve began wearing prism glasses for desk-work only almost two years ago.

So where are the changes?
I take out the garbage now. It was always his chore...which he has hated from the time we were married. When I returned from Florida I realized that he was getting garbage out of the house but not out to the curb. So it became my chore.
His reasons are different now. The loss of strength now prevents him from hauling the bags to the curb. He could still do it but tires quickly from the pain in his knee.
Actually this pain is the greatest physical problem that we have. He was the brains and the muscle of this family. And the muscle tone went rapidly when the arthritis pain caused by the knee deterioration became too great. Because of the Parkinson's disease, he is not a good candidate for any surgical procedures on his knee. PD stiffness coupled with the arthritis caused a very rapid decline in tone and strength. Loss of muscle tone aggravated the bow now seen in his legs. Pain and medication caused the decline in stamina.

The tremor is present in his left hand but it is a minor thing which he resents and I don't give much attention. That slight tremor has caused so much trouble for early PD patients who begin to take stronger meds to hide symptoms. Their fear of that identifying symptom of PD being recognized creates the greater fear of being fired ...which in turn leads to distraction at work...because after all, your employer only signed on for better...which makes it worse.
The hearing loss has been a gradual problem for years. He has a hearing aid but doesn't wear it often. I nag him to take his eyes off the road so that he can hear me while we're talking. He forgets that he has a "good" ear on the far side. It's okay, I'm driving.

So here's some good stuff. Steve is, as everyone knows, going to water therapy which he really began when I was in Florida and he would exercise in the pool - very similar exercises, I might add except for the walking. That pool had a deep end, the one at the therapy center does not. He's doing Nautilus and other exercises from a program designed just for him. And there is some improvement.

He understands about increasing his stride but since this former cross country runner always had a short walking stride, it is that much more difficult to increase it.

The arm swing is another problem which is being addressed at the therapy center and in massage therapy. I haven't seen much improvement but it certainly isn't worse...which with PD, may be an improvement. What makes me feel good is when he says he can feel a difference. His triumph is our triumph.
Sense of smell is almost gone - never was that good. Sense of taste...well, we use different varieties of pepper to hit the tongue on the way in.

I can't talk about sex here because our daughter reads this blog and she doesn't like to think that her parents ever...let alone discuss it. We all know that she was delivered to the hospital in a lovely basket by the stork. She knows about storks and chimneys because she used to live in the Netherlands.

Some of my household identity came from the repairs/remodeling which Steve made around the houses we've lived in. The first house had a new enlarged kitchen, a brand new powder room and a remodeled bathroom all due to his excellent handiwork. This house has not fared as well with remodeling but has had plenty of repair work. He stopped working much on the house when he went into contracting...need I say much more?
Yes, the remodeling is waiting for...? I'm a terrible plumber but in the next few weeks, he's going to teach me how to replace the kitchen drain. We replaced some underlayment (I pried and he supervised) in the kitchen in October and between the two of us, we repaired the furnace in November. So while I would prefer that he do this work while I do almost anything else, it has brought us into closer cooperation.

I bite my tongue less often now when one of us makes suggestions about supplements to try. He's repeatedly reminds me that he can't go back to the 1990s to take CoQ10; he's taking it now. Back then he thought it was all witch doctor stuff. Now he not only listens, he reads, he discusses and he tries the ones that seem to have the most promise.
The latest supplements are a revisit to turmeric (curcumin) and a test of glutathione (with NAC) and milk thistle. And they seem to be helping. I see it in cognition skills returning and an attitude change. He's getting Jeopardy answers that even contestants are missing. That makes my heart soar. I think we need to learn to Tango soon.

I know he'll never have the brute strength he used to have and I know that there may be many changes to come, but like most PD families, we have to live with hope for a cure in our future and that of all neuro-motor patients.

See, it's not just about him, this disease; PD is an Us disease.


For some fascinating info about curcumin, take a look at this site


  1. I want to thank you for sharing your journey with PD. I'm 55 and was diagnosed when I was 49.

    I exercise 6 days a week and Nordic Walk. The poles help with balance issues and posture. Here is one of my blogs.

    I take COQ10 as well as other PD meds.

    Bill Trewin
    Moncton, New Brunswick, Canada

  2. Maybe your blog has a "cut" feature so you can hide the sex part for your daughter and the rest of the reader can click to read the full story.


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