so what ultimately happens?

[wendya432]

With PLS, what is the end outcome? I guess I mean, what happens when your UMNs are all shot.

I'm not trying to look on the bad side or anything. Just generally curious. As I slowly progress, I just started wondering: What exactly happens at the end of the progression?

Not sure if I am getting this out right... Having trouble finding my words today. (another thing I can blame on this process? brain seems to be functioning slower lately. boo!)

 

[Tokahfang]

It takes a much, much, much longer time, but otherwise it looks a lot like end-stage ALS with less atrophy - you live in a powerchair, use your computer in a different way, get a PEG, etc. Most people don't get there, though, PLS is often so slow that old age usually does it's thing first. The PLS-friends list has a few ladies in their 70's on it, and most of their commentary that isn't a direct answer to a question is the common complaints of old age merely enhanced somewhat by the PLS symptoms.

 

[dalvin]

I think the progression rate is different with each person too. Mine seems to be more agressive thamn what the docs expect. Just 2 years ago I was still able to work and could commincate quiet well. Now I'm no longer able to work, have trouble talking or even eating. Going in monday for a peg, spend a good part of the day in a pwc and I'm only 55. Thats why I say it depends on your progression rate

 

[Clearwater AL]

wendya432, your post is a sincere post that I believe many "Just don't know what to say to..." (myself included). All sympathy and prayers goes to those diagnosed with ALS. PLS deserves it's fair share of sympathy but often those diagnosed with PLS (almost) get a "Congratulations... you don't have ALS..." for lack of better wordage. Like those with ALS, just hope and pray everyday a major medical break through is announced tomorrow.

 

[TRB1]

I'm getting on a bit (77) but was diagnosed with PLS some 4 years ago. My main problem is with walking and standing. For this I need two sticks but when out I use an electric scooter which fits in the car without a problem. I have just voluntarily taken a driving test and passed without problem. My voice is slowly getting difficult and I think I probably sound permanently drunk although my family are too diplomatic to say so. I get cramp usually at night but this is controlled reasonably well by taking quinine tablets. I also get involuntary "Kicks" if I sit down in a relaxing position for any time. The thing that bothers me the most is the effect on my emotions. I could readily cry whilst watching television for no particular reason and if I start laughing I have great difficulty in stopping. My specialist has said that at the rate I am going I can expect a few more years of useful life.....that is providing I don't fall over and break my neck beforehand and there is a strong possibility of that since falling over is rather a regular thing. Otherwise I still enjoy life. The computer is a godsend, I keep Alpacas as pets and swim regularly so its not all doom and gloom.

 

[vzandt]

TRB1.. My husband had the same problem...especially the crying. He was terribly embarrassed when our 38 year old son moved further away and when saying goodbye he cried for four hours. It's not like our baby was leaving home. He left twenty years ago. Hubby's doctor gave him neudexta and it has done wonders

 

[billbell52]

If you look at statistics most people don't die directly from PLS. Of course falling down the stairs and dieing is indirectly caused by PLS but not directly. I can't really exercise so I'll probably die from heart disease but it is not directly due to PLS.