My Story of ALS for 24 years now

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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.
 
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do you not think that others would benefit from pool therapy ?
 
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i think a lot of pals do use the pool in various ways. If there is access to a warm pool as you have it is better. I am glad you have such access and that it has helped you
 
that is some incredibly slow progression, I'm on trach just two years from diagnosis
 
very sorry. Yes I realize I have allot to be thankful for. I do physio and exercise every day wether we go to pool or not but that's how it has affected me. Exercise is very important for this slow progression. But if I had just listened to the doctors ,I wouldn't be here right now.

Exercise was not recommended. In fact it was felt it would cause it to progress faster. ALS affects everyone differently and I feel you need to react to it by how it is affecting you. So sorry it has happened so fast with you. I know so many people that it was quick like that too. I knew an 18 year old girl that developed respiratory problems quick too. I am only now not able to speak or swallow.

But I hope I can act as a beacon of hope to someone out there. I was written of by the doctors. I ws given 2_5years to live in 2001. In 2004 It was recommended that I get a stomach feeding tube. So glad I didn't but waited till last year to get it. Turns out it has to be replaced wat least yearly. It's areal pain but necessary now.

I want to give hope because it doesn't always turn out as they predict. You tend to be all dumped in the same cart if you are pronounced with ALS. What I am saying is to listen to your own body and never give up hope. My first two years all was negative. I kept losing. I realize I was fortunate to have those two years to myself refocused. It was then then that I sarted to exercise not caring if I caused mlore rapid progression. It didn't. I hope I can give someone some hope. I am sure there are others like me. I started to see some positivity in myself. For example my arms started improvig instead of becoming worse.
 
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Lauren “Lolo” Spencer was diagnosed 21 years ago, confirmed (2. opinion!!!!!!!!!) 6 years ago.
 
I just wanted to say to RAO of NZ again how sorry I am that the disease progressed so rapidly in you. I have allot to be thankful for. I remember those first years. I screamed out at God - this wasn't fair! It wasn't till I read the book by Max Lucado "He Chose the Nails" that I realized I needed to accept my quadriplegic state as where God wanted me right now, and start using what muscles I had left. "Never give another inch to this disease if I could " because my motto as I started exercising in the pool.
 
The warm pool is my best friend. I cramp in water lower than 85. Our indoor pool runs around 82-83 and I can't tolerate chlorine smell.

Our outdoor pool is very big and has a heater. The heater can't keep it warm enough when the temperatures drop, but it's always above 85 from mid-March through early November. The other months, if we have above average temperatures, the water temperature climbs back up above 85. In the Summer it runs around 90, sometimes as high as 92. In the morning it is shaded, but by noon it is full sun. It helps a great deal with my mood and this year, I've decided to roll down to poolside even if I don't go in.
 
"Lauren “Lolo” Spencer was diagnosed 21 years ago, confirmed (2. opinion!!!!!!!!!) 6 years ago"

"doctor's" first opinion, second...
worst thing is that when you are labeled, nobody dares to take label off.
quality never goes out of style
 
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