Pls?

[AngelaRenee]

My mother is 52 and has all the symptoms of PLS. She went to a local neurological specialist and then got a secound opinion in Lexington KY. The doctor said her progression is slow and although it may end up as ALS he wanted us to do some family research. Its been about three months since then and my mother has gotten worse. It seems fast to me. Her left hand and fingers seem frozen as her right progresses. Her legs are weak and she is loosing strength on one side of her body and now the other. She can still walk but she has fell a couple times. My father and sister are in so much pain emotionally. They shut down their emotions to try and deal while I breakdown every day. Why her? Why us? There are no connections to ALS in our family. My grandmother has recently become ill but she has problems walking and has fallen. Does my family seek a home healthcare nurse or do I quit my job to take care of her? She needs help more and more every week it seems. I am so emotionally exhasted.

 

[AngelaRenee]

Forgot to mention the slurred speech trouble swallowing and laughing issues. I am only grateful I see her laugh more than I do cry.

 

[Tokahfang]

Have you contacted your local ALSA chapter? If her doc things she may be progressing to ALS, they might help. And once you're in, you're in, and even with PLS they are very helpful. (I got my powerchair from them.)

I'm sorry your family is going through this. It is never an easy thing, and your family will have a lot of hard decisions to make. Remember to have good times now, while she is as able as she is - a vacation would be a good thing for you all. Don't put off buying assistive devices that can make her more independent for the moment, that's a big emotional help to her and to you. Don't wait till you can't live without things like a wheelchair, get one while it can still maximize her ability to go out and enjoy things.

If you need PLS-specific advice, our forum is down the list a bit.

 

[olly]

Hi angela,so sorry to read about you mum.
I think beky has covered the practical advice but any more questions please ask.
Your mums progression does seem quite fast,unfortunatly its a case of waiting and regular emg's to determine what type of mnd she has.
Pls is extremely rare and to be inherited even more so.

 

[bob_s]

Angela,

Sorry to hear about your mom.

I second the part about keeping ahead on assistive devices. For example, I was unsteady with a cane and in danger of falling several weeks before I got a walker. So it's good advice to plan ahead.

 

[AngelaRenee]

Thank you all. My father and her went on a cruise but she was in a wheelchair the whole time. She also fell at the airport and knocked her tooth out. Luckily we went to the dentist and they temporarily fixed it. She did register and we plan on going to a support group next week.

 

[Tokahfang]

It sounds like you're on the right track, then. Don't forget to take time for you as well, and the same goes for the rest of your family.