howdoug
Member
- Joined
- Jan 9, 2012
- Messages
- 22
- Reason
- PALS
- Diagnosis
- 01/2001
- Country
- CA
- State
- ALBERTA
- City
- PONOKA
I was diagnosed with ALS on January 8, 2001. Was given 2-5 years to live. The doctors were concerned though that they could not find any muscle fasciculations anywhere on my body. I was referred to another doctor for their input. Her view on the EMG results were that she did not want to say definitely that it was ALS.
I was referred to the MS clinic. After about 6 months with them, I was referred back to ALS. They said I was progressing way to fast for MS. Also I showed no sensory deficits. often you can go blind for example for a little while with MS. No such things with me. With yet another EMG the doctor said the only last thing would be a biopsy of the base of my brain but they of course would never do that. The best that he could say was that the deterioration of my nerves was occurred in the base of my brain. It was not progressing down my spinal column yet as occurs in typical ALS.
By this time I was about 3 years into this thing and was already virtually a quadriplegic. I asked the doctor if I might benefit from exercise and asked if I should start going to the pool. Probably wouldn't hurt he suggested. So I started at a therapy pool at our local mental hospital. There the water was warmed to 90 degrees . Average pool is at 83 to 85 degrees and I spasm and go rigid in this water. In the warm water I found I could do so much better. The main thing we focused on was maintaining my breathing. We would end in the hot tub. Rather than seeing myself always losing and deteriorating I was maintaining or slightly improving myself. A doctor later related it with how a whale is able to breathe in water but suffocates when beached.
Anyways the progression virtually ceased. I was a quadriplegic but found I could generate some strength adducting my limbs. There was no way I could abduct anything. I remained much the same for 20 years going to the pool 3x/wk. Then March 2020 we had to quit the pool for the pandemic. Late 2021 we were able to get going again. Then July 2022 I first showed signs of slurring my speech. This has progressed to now having my tongue so denervated that I can't speak legibly to make anyone understand me at all. I also have become very quiet when I speak. My swallowing has become the pits. When I chew I often bit my tongue or my cheek. Fortunately a year ago I got a Gpeg put in my stomach and so get most of my meals blended and infused into me.
I still go to the pool but instead of putting my head down into the water and trying to work my arms as much as I could so I could be forced to breathe deeply when I was tipped over. My arms just plain don't work at all anymore. So I still am able to push with my legs so we have me lay on my back and I push against the wall for about 20 seconds then breath deep breathes about 10 times. We do this 5 or 6 times. Very tiring. Find I sleep ever so much better. Very tired the next day too. Still able to take deep breathes. Will keep up the pool therapy for as long as it helps me.
Now have a computer tablet which will speak for me but I need to type in what to say or have phrases recorded. I can send texts too and make phone calls although the voice that speaks for me can sound very robotic. Also I have my power chair that I drive with my chin control. Had this for many years now. Was always fun to go to parks and travel on the bike paths. would put it in 4th gear and go about 4 mph.
I was referred to the MS clinic. After about 6 months with them, I was referred back to ALS. They said I was progressing way to fast for MS. Also I showed no sensory deficits. often you can go blind for example for a little while with MS. No such things with me. With yet another EMG the doctor said the only last thing would be a biopsy of the base of my brain but they of course would never do that. The best that he could say was that the deterioration of my nerves was occurred in the base of my brain. It was not progressing down my spinal column yet as occurs in typical ALS.
By this time I was about 3 years into this thing and was already virtually a quadriplegic. I asked the doctor if I might benefit from exercise and asked if I should start going to the pool. Probably wouldn't hurt he suggested. So I started at a therapy pool at our local mental hospital. There the water was warmed to 90 degrees . Average pool is at 83 to 85 degrees and I spasm and go rigid in this water. In the warm water I found I could do so much better. The main thing we focused on was maintaining my breathing. We would end in the hot tub. Rather than seeing myself always losing and deteriorating I was maintaining or slightly improving myself. A doctor later related it with how a whale is able to breathe in water but suffocates when beached.
Anyways the progression virtually ceased. I was a quadriplegic but found I could generate some strength adducting my limbs. There was no way I could abduct anything. I remained much the same for 20 years going to the pool 3x/wk. Then March 2020 we had to quit the pool for the pandemic. Late 2021 we were able to get going again. Then July 2022 I first showed signs of slurring my speech. This has progressed to now having my tongue so denervated that I can't speak legibly to make anyone understand me at all. I also have become very quiet when I speak. My swallowing has become the pits. When I chew I often bit my tongue or my cheek. Fortunately a year ago I got a Gpeg put in my stomach and so get most of my meals blended and infused into me.
I still go to the pool but instead of putting my head down into the water and trying to work my arms as much as I could so I could be forced to breathe deeply when I was tipped over. My arms just plain don't work at all anymore. So I still am able to push with my legs so we have me lay on my back and I push against the wall for about 20 seconds then breath deep breathes about 10 times. We do this 5 or 6 times. Very tiring. Find I sleep ever so much better. Very tired the next day too. Still able to take deep breathes. Will keep up the pool therapy for as long as it helps me.
Now have a computer tablet which will speak for me but I need to type in what to say or have phrases recorded. I can send texts too and make phone calls although the voice that speaks for me can sound very robotic. Also I have my power chair that I drive with my chin control. Had this for many years now. Was always fun to go to parks and travel on the bike paths. would put it in 4th gear and go about 4 mph.
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