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Let’s start at the beginning…
In 1990 I decided it was time to get fit. I ate healthy foods, did weights, and undertook aerobic training. When I was 40 years old and living in Victoria, B.C., I could run in the mountains for 1 ½ hours or ride my mountain bike for 2 to 3 hours with no problem. I walked to work every day, 45 minutes each way. I worked as a computer technician; servicing computers in up to 12 locations every day carrying a 35 pound tool kit. It was great, I never knew where I would be for lunch, and I could do my banking and attend appointments at the dentist when I needed to. I was no couch potato!
Then I began to become fatigued while walking and thought it was because I had hit forty. After I was diagnosed with ALS in 1999 (a process that can take up to one year to rule out any other conditions) I remained at my employment for only five weeks, quitting because of the danger of falling while at work.
Good disability insurance has been my saviour. No longer able to work, I was forced to rely on insurance for my income. Always a loner, I relied on myself and now, am forced to rely on others for personal care. It is difficult to accept care from others. Adaptability is a challenge. Adjusting to my changing abilities is tough. I am now unable to move my legs, or hips, and am experiencing difficulty with my upper body, arms, and speech. A Dynavox will assist me to communicate when I can no longer speak. My muscles grow weak with effort and do not regenerate. I am reaching the limit of my ability to adapt to these changes, and I need to ask for help. Frustration is a daily companion. I have a sense of urgency. I live for today; there will be plenty of time later on when I won’t be able to do what I want to do.
I was well supported while I was living in Victoria with up to a maximum of 120 hours of home care per month. When I moved to Ontario there was no funding for home care until I was eligible for OHIP, approximately 3 months. Home care in Ontario only provides a maximum of 60 hours per month. The medical clinic in London at University Hospital provides clinic support once every 3 months where I am able to access the multidisciplinary team to address my needs for medical treatment, speech therapy, nutrition, physiotherapy, occupational therapy, and social work. I see many medical professionals on a regular basis and I have been fortunate to obtain a medical practitioner here in Ingersoll. We have converted our van and this is a great help in getting out to appointments and just for fun.
Now I am able to enjoy my radio controlled vehicles outdoors when the weather is good. I watch TV – motorcycle and car racing. I used to love to watch the Outdoor Network, but now it just reminds me of what I can no longer do. I really enjoy getting out about town, zipping around in my motorized wheelchair, going to Radio Shack or PB’s for fries. However, there are some places I can’t get into around Ingersoll.
There is a noticeable lack of public knowledge about ALS or Lou Gehrig’s Disease. Here are a few facts everyone should know about ALS. This is a disease that is universally and progressively fatal. Cases have increased in the last ten years although diagnostic methods have not changed. It is diagnosed by ruling out other similar diseases. Definitive diagnosis is only made on autopsy. In the last decade the ALS death rate is the same as for AIDS. People who are extremely physically fit seem to have a predisposition to ALS. Research is ongoing, but no effective treatment is on the horizon. It is possible to take experimental drugs, but they are extremely difficult to obtain and terribly expensive with no noticeable beneficial effects. Treatment only prolongs the inevitable progression of this disease by a few months.
I can only try to preserve my quality of life for as long as I am able. I am well cared for, but it is difficult to watch my mother getting tired and missing out on enjoying her retirement while she cares for me. I struggle to accept care gracefully. I look to the future and know for sure what is coming.
It is bad enough to know I’m dying from ALS, but the worst part is living with it.
Larry Connor, June 2002
(as told to Fran Hudson, Parish Nurse)
MGM
© ALS Independence 2003-08