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Muscular Dystrophy Message Board
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Old 04-15-2012, 10:38 PM   #1
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Join Date: Mar 2012
Location: Regina, Saskatchewan, Canada
Posts: 16
InTheVoid HB User
How do you deal with your decreased abilities?

Hello I`m a 25 year old male living in Saskatchewan. My doctor suspects I have Spinal Muscular Atrophy type 3, which my mother has and two of her sibling are suspected to have. I know there are people on this board that are at different stages of their condition with different abilities, and maybe someone in a similar situation as mine will reach out, I'm lonely and my own two brothers are dismissive regardless of what my doctors say.

Four years ago I was relatively fit and working in construction. I started out flipping houses with a contractor, I would demo, drywall, lay flooring, hang trim, paint, tile washrooms, frame, structurally brace basement foundations with steel c channel beams, shingle roofs, install siding, install windows and doors. Pretty much everything a homeowner or contractor would hire someone to do I could, and loved to do.

About two and a half years ago I found a new contractor and we mainly Tiled washrooms and kitchen backsplashes for new home builders. It was a good gig, we had lots of work from a couple different home builders plus existing home owners called on a weekly basis for renovation work.

About a year ago I was doing a side job for a family member while my contractor was on a 4 week snowboarding vacation in British Columbia. I gutted his lean-to style back entrance to his one story home, re structured his ceiling, re insulated, drywalled, built a full set of stairs to his basement and a half set to his kitchen, as well as miscellaneous handy work throughout his home. All in all, a lot of work! I think It took me 4 weeks to complete. When my contractor came back, I noticed I was having pain in my legs while I was climbing stairs. A few months later I had cramping in my hands while holding drills or hammers, as well as upper back and hip muscle pain.

At the moment I am working 20 hours a week at a sporting goods store, doing bicycle tune-ups and repairs. I got this job 6 weeks ago and worked 30 hours a week, but have since reduced my hours. The bike repair shop is on the second floor and while we have a freight elevator, bike that come in usually must be carried up two flights of stairs and walked back down again for the customer, which I find very fatiguing after two or three times in a day. Usually someone does this six or eight times a day during a 9 hour shift. My day right now is a six hour shift, I put a bike in a stand and move around it on a stool, removing the wheels and adjusting the hubs, checking the brakes and adjusting the drive train. On occasion I'll replace a part or two. I tune about 4-5 bikes on a good day.

By the end of a five day week of 6 hour shifts, I find I'm walking slower and Its harder to climb stairs. My hands and shoulders burn, and it's often hard to hold my head up, or even stand in front of my stove to cook a much needed meal. I love working with my hands, I get so much satisfaction standing back at the end of the day and saying, "I made that!", or "I Installed those cabinets!", or "I rebuilt that bicycle!". I know I need to start to looking for a less physical job, because if I keep doing what I'm doing I could accelerate my condition.

I don't know what to do. I don't even think that I've fully accepted my condition. I want to work with my hands and I thought that I could handle tuning bicycles, but I'm learning that this is too hard for my body to handle. My physio therapist warned against this job, but working with my hands is all I know. I'm scared about change, I'm scared about what people at my current job will say about me when they learn about my illness. I don't think that I have the people skills to work a desk job let alone the accounting or administrative skills that one requires. I'm scared and feel so alone. I'm 25 and I should be out building a career. Please, does anyone have any insight?

Last edited by InTheVoid; 04-15-2012 at 10:41 PM.

 
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