Recent content by howdoug

It's the new one that they have out now. It has 2 parts at the back .1goes on top of head and other pushes down behind head. The chin part I put a folded facecloth under and pull it up under lower lip.

I am in a slower progression thankfully . But I do need to continue the struggle . It is very important for me to always do physio stretches range of motion and hold my breath while doing some arm exercises to stretch and maintain lung strength . Since my problem is a dead area between my brain...

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Been on bipap for about 12 years now. Humidity set at about 3 out of 4 on machine . Use nasal pillow and chin strap . We put a folded faceclothe under the chin part and pull this part up under the lower lip. It needs to pull in on lip. Have to keep lips closed to prevent air escaping . Otherwise...

Hi, my name is Doug . I live 8 mi NW of Ponoka, Alberta . I was diagnosed January 8,2001 and given 2-5 yrs to live.. Have been quadriplegic for years now but able to push a bit with my arms . Voice is very quiet most times and use the bipap nasal pillow to assist lots of times . Arm wrestle...

It was the ALS Society. They worried that I would progress the symptoms .

I am interested to here that your father has mostly UMN ALS. I was diagnosed January 8, 2001 with ALS. After couple years I tried exercise in a warm pool against the recommendations. Since then I was told that I had UMN ALS and exercise what muscles I have left is very important. At 2 years I...

I do not have familial ALS to be clear but I thought you might be interested in my story. I was diagnosed with ALS back on Jan 8, 2001. At that time they gave me 2-5 years to live. After about 2 years I progressed to a quadriplegic. I did notice that I still could adduct my legs and my arms...

Does anyone have experience with laser therapy? Someone is wanting to try red light treatment on me.

Thanks Al. Yes I am ever so thankful this disease has affected me the way it has. With full blown ALS you haven't a chance to do anything about it. I know. I've seen so many of my friends wither away before my eyes, and I've had the luxury of being able to exercise and maintain myself. I thank...

Thanks for all your info. Mine was a very rapid progression at first. Was quadriplegic after just a couple years. And my lung volume likewise rapidly declined. Like with ALS I was heading to death's door till I started pool exercise and have pretty well held the status quo since then. Don't seem...

My ALS specialist assures me I am dealing with ALS. Basically she said they would have to biopsy the base of my brain to confirm. My neurons of my spine seem to still be ok as I can get my limbs to move a bit in water and exercise and maintain them somewhat. My big problem is my lungs. Was sick...

I go to a therapy pool for warmer water as I seize up in a regular pool. The kiddies pool works though. It is getting to be a real struggle to get any movement at all in any pool anymore though.

I was diagnosed with ALS back in 2001. They thought it might be the PLS form of it and after a few years confirmed to me that it was. I would like to know what other people are like who are living with this condition called PLS form of ALS. I am now 16 years with this. I have been quadriplegic...

Yes I am a quad but am able to 'wakeup' my arms enough to be able to get a swimming action with them. Very thankful. Think mine is quite unique.