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.
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?
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 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.
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?
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.
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.
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