A Disease Diagnoses

I’m not sure what type of Throw Back Thursday post this is. Surely not uplifting or lighthearted. I’ve been hesitant to write about my husband’ disease. Perhaps because we live it everyday,  I have no energy to relive it in writing. Nevertheless this is what I remember of when we first learned my husband had Parkinson’s Disease.    I’m not even sure I’m remembering this all correctly. This will seem disjointed as I dig up small details from a time that already seems distant. A stiffness in one hand and arm. A slight limp. We attributed it all to sleeping in an awkward position and a fall on the ski-out at Sunshine in April of 2005. A chiropractor that finally admitted he couldn’t do anything to fix these problems, and suggests a visit to the GP. The doctor makes a referral to a local neurologist. July 2005 and My husband goes to the appointment alone. A mistake. The neurologist diagnoses Parkinsonisms.  I know what you have, he announces. He says it like my husband has just won a highly improbably lottery. My husband, at that first appointment hears only Parkinson’s. This is not news you should face alone.

If I could use one word to describe the weeks immediately following this news it would be blackness. 

I believe it was the second appointment when the neurologist prescribed medications. There is a chair for my husband and I  stand with my back to the wall in a corner of the office. I already dislike this doctor, who has made me feel like an inconvenient interloper. From where I stand, I read the computer screen. The diagnoses is actually Multiple Systems Atrophy. 

My husband takes two weeks off of work as he ramps up the medication. The medications however, quickly prove more troublesome than the symptoms they were  to alleviate. He is unable to drive, is paralyzingly fatigued and suffers from mental fog. He spends most of the day laying on lounge chair on the deck.

He still doesn’t know about the original diagnoses of MSA, a disease with a lifespan of less than ten years after diagnoses, and still doesn’t. And probably won’t unless he reads this blog. That’s okay.

A Bit ‘bent

What’s that funny looking conveyance that man is sitting on in the photo on my Instagram feed? That is a recumbent tricycle. My husband has Parkinson’s Disease. It affects his balance and endurance. Riding a bicycle was getting a bit risky. He’d taken a few spills. So, we decided he needed something  more stable. Those big trikes aren’t cool. But recumbents definitely are, even for people without mobility problems.

tombent

This is a one person trike, although they can be made for two. It’s geared like a bicycle, and this one has the advantage of a small battery-powered motor that can either assist in pedaling, or propel the rider along without effort. With the motor alone, it can go up to 40kmh. Because my husband tires easily, he can use it to assist getting up hills, or when his legs just can’t pedal anymore. The recumbent position allows you to pedal with greater efficiency, and it is so much more comfortable than a regular bicycle. Having ridden this one, I don’t know why anyone would want to sit hunched over on a bicycle enduring sore bottom, wrists, shoulders, and neck. There are recumbent bicycles too, which I’d love to try.

This link takes you to a video of Thomas sharing the road with the snowmobile trail groomer back in January when he first got the trike. You don’t want to travel icy roads like these on two wheels!