Progression faster in older pals?

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DreamsEnd

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Thought I posted this last night but I can't find it. Wondering if anyone has seen any data on pALS that were older when DX'd have faster progression? I seem to see that in my pALS and some of his older friends. Don't think he'll make two years.

Sherry
 

Nikki J

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I have read it is faster in those over 80 slower in those under 40 but there is so much variation. Bulbar is considered usually faster than limb and is more common in older people. I am sorry your PALS is progressing quickly
 

Barbie

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gosh Sherry, so sorry. it sucks.

my husband was 46 when diagnosed. slow progressing, but really slower than most now so IDK.
 

Atsugi

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Sorry to hear your PALS is progressing quickly.
My wife was 50 at first symptom. She didn't make it to 51.
At least the torture was over quickly.

My point is that you can never tell. We just have to be prepared.
 

tripete

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It was suggested when I was first diagnosed at 48 that I was slow progression because in the year and a half it took for a diagnosis I did not have much showing other than my breathing problems and some hand pain. That was November 2014. I am now 49 and I have been told that I am rapidly progressing as my breathing has dropped dramatically and now most of my diaphragm is dead. I still have my hands and while they are visibly wasting away they feel like clumsy sausages. Everything else works but gets fatigued almost instantly. My hope is that my breathing puts me down before the rest of my body (hands, arms, legs, feet, mind) completely gives way.

I don't think there is any way to chart or tell what the progression will be like as it seems that it can change when it wants.
 

LifeEnthusiast

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I wish I had an answer to that. I was 45 when ALS was first mentioned as a diagnosis. I rejected the idea because I felt okay barring a few issues. I continue t believe it was all a result of some cervical issue despite being advised otherwise. I am 47 now and awaiting a third opinion.

I still like to believe that I am a slow progressor, particularly when I read other PALS stories here. But I'm really not so sure. I can see continual decline but at least I am still functioning relatively normally. I just make adjustments.

However, when I look back at the last couple of years, I can see where there was much faster and noticeable decline and it always seemed to coincide with me pushing my body too hard and too far. Denial was a huge contributor. Now I'm really careful in that respect. I don't know if it the two are related to the rate of progression or not, though in my case I feel they are tied. At least, that's how I feel at the moment.

I suspect my breathing is changing but I have never had it tested. I lived in a country that didn't really understand what to do with a patient like me. The fact that I have had pneumonia twice this year makes me suspect there is now a breathing component. Again, when I read others PALS and CALS stories breathing appears to be a large predictor or rate of decline. But I could be completely wrong. I'm so new here and have lots to learn. This is just my interpretation.
 

DreamsEnd

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Thanks for all your replies. Atsugi, less than a year, how horrible. You both were very brave and strong from all I've read.

I know we're all different and even though my PALS doesn't push anything it's taking over rapidly. Two weeks ago he could still do standing transfers, this week, barely and I have to really hold gait belt as he tends to go down. Have ordered some adaptive clothing so toilet transfers will be less and we can use urinal in the daytime. Trying to stay ahead of it all. His attitude is still terrific in spite of finding his emotions really near the surface, which is fine with us but makes me wonder if he's suppressing some fears because tears come quickly with good people death reports on the news.

Sherry
 

MaxEidswick

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>when I read others PALS and CALS stories breathing appears to be a large predictor or rate of decline

more a measure than predictor. in this, like everything else we are different
 

anderkling

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Sherry, I'm impressed with your attitude, your preparedness and your obvious love. Progression is hard to predict, it seems. Men in their 40s and 50s typically progress slower than women. Some progression is steady while some plateau for periods, then decline suddenly. It's very individual.
-Charlene
 

affected

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Sherry my Chris was only 53 when diagnosed bulbar onset and was gone less than a year later.

I spent yesterday taking a friend PALS over to a doctor to have a skin cancer removed as his wife was ill. He was diagnosed only a short time before Chris, so over 2 years ago now and he is in his 70's. His wife said to me this week that she feels her husband is now at about the level of disability that Chris was when we first met (3 months after Chris was diagnosed).

It seems that to some degree speed of progression is random, though I'm sure that once you are over 80 it could be faster due to other age related diseases present, but not necessarily faster.

Sorry your hubby is having this rapid progression. Sometimes legs can seem to fail suddenly because there were just enough muscles left to keep some mobility, but in fact there were lots of failed muscles too, and it seems sudden because it only took that couple more muscles to give out to stop standing up altogether.

So sucks
 

DreamsEnd

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Now my Jesse can't do standing transfers. Getting him ready for bed last night and transferring from toilet to chair and his legs completely gave out. He's 165 lbs thereabouts and I'm currently 115. The floor won and he went down into a very uncomfortable position. Called hospice as I was instructed and they called fire department and the nurse came. They got him to chair and then I asked them to transfer him to his bed. Nurse gave him a couple of small doses of morphine as he was trembling all over and in pain in hips, ankles and knees. Crushed the rest of the meds and delivered in his tube. He was asleep in 20 minutes.
Now to figure out best adaptive clothing for his needs and how to have two people here for all transfers.
We received from the VA, the requested head support sling for our Hoyer lift but can't for the life of me get it under him. I've searched Google for instructions or videos but no luck. So I'm using the regular sling with the Hoyer. I stand to left of Hoyer, hold his head with one hand while reaching across in front of the upright bar to pump the lift, while having one foot on the lift so it doesn't move. Very awkward.

Sherry
 

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I was 59 when diagnosed. As time goes on I keep remembering symptoms as far back as age 55. I thought at the time I was just ungracefully aging, or it was a payback for not taking good care of myself. I think we sometimes overthink our progression, and denial plays a huge factor.


MY NAME IS MARK......AND I AM CLEAN FROM FALLING FOR 20 DAYS....YIPPEEE:lol:
 

Atsugi

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Sherry, we had two slings. Both supported the head. Give a call to 888-929-3633 and talk to the sales people. --Mike
 

affected

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Sherry can a nurse or OT come and help you work out that sling?
So tough when those legs go, but then a hoist is just so much easier and safer once you work out the sling.

I have video I think in tips and tricks, but sadly Chris was standing to transfer then and I never got around to another video to show how I got the sling under him but it was easy.

Stay strong Mark, you can stay clean for good I just know you can!
 

anderkling

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An OT is trained on how to get a sling under. I'm sorry you're going through this. I feel for you and your Jesse, and hope the help you need comes as soon as possible.
Charlene
 
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