a few more questions

[donnablakely]

To review....I am a caretaker for my dad who has PLS. We go to the neurologist in November, but I was just wondering where this is disease is really leading us. Dad doesn't really now much about his disease as none of the doctors have really been specific with us regarding what we can expect in the future.......so........

 

[donnablakely]

oooops.......this is the rest of my post! I acceidentally hit the return button before I finished

anyway.........wondering..............

1. Will dad eventually need a feeding tube or bipap?
2. Will he get to the point where he is physically...not mentally... a "vegetable" I fear this disease is the part similar to ALS that traps you in the body......
3. He can hardly be understood anymore.....will medicare or any foundation help pay or even "rent" a dynavox?
Thanks for your help,
Donna

 

[Raydavis]

Hello Donna, I was diagnosed in March with PLS and my symtom of twitching began 1+ years ago and my speech began to show problems roughly Dec. 1 and the answer to your all your questions is "yes". I am 58 and we have learned more about what the future will be like is on the Forum. My doctor can't tell me much either because this disease is different to all. Mine will be different from your Dad's. You can get a better idea for the future from others who are the "family". I read about a man on the Forum who has had PLS for 3 years, but there was another who was DX 3-4 monts ago and is further along then I. My suggestion is to search for a friend, or friends, on the forum and share your life with them. You are welcome to talk back and forth with my wife if you would like, but that is up to you.:-D I haven't figured out the process of the forum yet, but I will keep trying. Im trying to find out from others about my decrease in stamina level. I started getting tired at 5 pm in march, but now it is 3 PM. I sleep 9-10 hours a night and use a CPAP machine for my breathing. I am trying to find others who have the same problem and I just haven't learned how to use the Forum yet. My wife knows more then I. I know this: this disease is from this lousy fallen world not from our loving God. In Christ Friendship Ray

 

[peter57]

Hi Donna,
I was eventually diognosed with PLS 12 months ago after probably 3 years of different symptoms, mainly left sided arm and leg weakness. Speech began to go about April this year but i am still able to be understood if people are paitent.

I can still walk, although balance is an issue so i use a cane or a walker if the ground is rough.
As you can see it is different for all people. There are some on the forum who were diognosed about 10 years ago that i know off and all different times in between. I am sure some will respond to you in due course.

oh i amost forgot, breathing and eating are fine, drinking beer is also fine:grin:

cheers and welcome to the forum, Donna and Ray its a great place to find info from.

cheers
Peter

 

[olly]

hi donna.
pls progression is wide and varid and can depend on many things like age of onset and if ever lmn involvement eventually manifests.
i do think the older onset patients bodies have a harder time dealing with the disease.

i know many in there 50's-70's who have had pls for 20+years and despite there disability are still active with use of walkers ect. some of these can still talk.

they say respitory problems dont manifest till later in the disease but in some that is not the case,though i think not as life threatning as in als(so not to scare you)

i have had pls 10yrs,started with leg onset and has progressed slowly up the body.
i developed bulbar symptoms about 3yrs or so ago.
despite bulbar problems i can still talk with the occasional slurred speech or words sounding garbled.
i can still walk a short distance with aids and try to stay active doing just the usual daily jobs around the home.

has it been 3-5yrs with symptoms before your dads diagnosed? emg ok?
ofton in the early years progression can seem fast and symptoms severe but usually things plateau.
please try not to worry too much.

from what i know of in the usa medicare will pay for any equipment through the alsa or mda.
i think the mda are better and can ofton loan equipment.
if you look up the nearest mda and call them i'm sure they can help.

 

[hopingforcure]

Donna and Ray,
You have received amazing info from Olly she is amazing and really does give great explanations for UMN issues. I hope you both come visit often, we will find the answer's to our questions through each other. We can figure this out together, and help each other, we are all different in porgression, location, situation's, but it is amazing how much we are alike in spirit and heart.

 

[kevinw]

I agree with "hopingforcure"......"olly" is a great for information and will always be there to help, so will "hopingforcure". So please post any information or questions you may have, a lot of us also surf the topics to try to help make sense of the future.

 

[olly]

aaahhh shucks you guys
i love to help others,thats just me.

ray, sorry i overlooked you.
welcome to the forum,we are like an extended family and you will find lots of friends.
you will soon get the hang of things,feel free to ask for any help

 

[Suzy]

Hi I'm new to this. My husband was diagnosed with PLS in April 08. Having read some of the previous posts about symptoms. I'm a bit confused. Mark's problems started with back pain and then gradually went to his legs. His upper body was fine. He is now wheelchair bound and has been for nearly a year and his arms are getting worse. There is no slurring with his words as yet and his eating and swallowing are fine. Although I have noticed that he loses his temper more than he used to but I thought that was just frustration with his condition. Does he have PLS or ALS? Also we seem to have to fight for every service and help in our area. We both still work and are not entitled to much so we have to pay towards the home adaptations to our house. We have two young children 6 and 2 and its hard work.

 

[joelc]

The only real way to tell if it is ALS or PLS is time. If it progresses really slow then they will tell you it is PLS

 

[hopingforcure]

Suzy,
Glad you found us, like Joel said time will tell. Sounds like your hubby has soe emotional issues from the disease, did he try any anxiety meds? that is part of many of what we all do for a feeling of normalcy, without the up's and down's that this disease can cause. It is real honest to goodness emotional issues, caused by the motor neurons.
Have you attended a ALS clinic? your husband should be eligible for MDA and probably ALS assn. help.. You should also be able to receive disability for his illness. First thing what doctor is he seeing? Hope we can help, glad you found us.