ALSA Chapter Support Group?

[DesertGypsy]

Hi everyone,

I haven't posted much, so I'll restate here: My mom has a preliminary diagnosis of PLS after 2+ years of progressive symptoms starting in her left foot. She uses a wheelchair full time now, and shows signs of nerve denervation in her other foot/leg and slightly in her arms (EEG only, no outward symptoms as yet).

I'm posting to ask if ALSA is an appropriate place to look for support (for myself as much as my mom) for PLS. I called to ask about local support groups, and the woman on the phone barely knew about PLS. When I said that I wanted to be sure that I wouldn't be intruding in a group largely filled with friends and family of those who are facing a terminal diagnosis, given that PLS isn't terminal in and of itself, she replied, "Oh, that's interesting."

Interesting?

Later, when I said that ALS hadn't been officially ruled out at this point (it hasn't been long enough) she appeared to be confused and said, "I thought she has PLS?"

Please tell me this was a fluke. I'm really in need of some support, and I thought ALSA was the place to go. Thanks for reading.

 

[johnnyliverpool1]

a women on the phone aint gonna know...when i showed my local doctor my clonus, he didnt know what it was........then after my neuro told me wat it was i saw my doc a month later and he regaled on about wat clonus was...obviously after having read up about it....this nerve stuff is a mystery to most people ...johnny

 

[DesertGypsy]

Well, sure, a local doctor being unfamiliar with all things MND is par for the course. But someone at ALSA?

Thanks for the reply.

 

[johnnyliverpool1]

you could ask the security guard...or the dishwashers.....but i think you would be better off going straight too the horses mouth............johnny

 

[DesertGypsy]

I'm not really in the mood for this. I did not ask a security guard or a dishwasher. I called ALSA. The only person with whom I had the opportunity to speak appeared to be unfamiliar with PLS, the MND for which I was seeking support group information. I am simply asking if anyone with PLS has found ALSA to be helpful. I thought this seemed like the appropriate place to ask such a question. I appear to have been mistaken.

 

[johnnyliverpool1]

i hope you get your answeres on here...in fact am sure u will......the fact my local doc and your woman on the phone know nowt about mnd is not surprising then is it.....the woman on the phone sounds like the receptionist,,,good luck johnny

 

[DesertGypsy]

Thank you. Good luck to you.

 

[AKmom]

I had a similar experience with the local al s a here too. I have since learned that because P L S is so rare, not everyone is aware of it existance. Including the A L S A. I think they have volunteers working don't they? Anyway, when I tell others that I have p l s, they always ask what it is, including some docs!

 

[DesertGypsy]

AKmom, I'm sorry that you've had a similar experience. And yes, it seems that PLS is almost unfathomably rare. What a way to be special, right?

Thank you very much for your reply.

 

[LouLou]

I belong to a local support group in Seattle that is sponsored through the Muscular Dystrophy Association. They hold monthly meetings at a hospital for patients and caregivers with ALS, PLS, and other muscle diseases. I have met 3 others with PLS and we are all on a team for the upcoming ALS walk in September. The MDA is so helpful. Maybe try them for support. Good luck to you.

LouLou

 

[AKmom]

Here in AK, I did call the MDA which also works with A LS A here. In the end of the conversation I was told "we don't work with people who have whatever you have." I never looked any further. At first I was upset not knowing what to do for help. But then I prayed and I know that God is providing for the things I need. My support for emotional stability comes from the many friends I have met here. Sorry to say that not all organizations are equal in their support.

 

[kevinw]

Reading everyone's post's makes me feel sorry for everyone seeking help. I cannot believe the MDA turned anyone away. I don't know maybe if these people on the phone would understand that PLS is a "Motor Neuron Diesease", just like ALS, and explain it is only the "Upper Neuron's at this point and not both" they would understand a little bit. I just don't know maybe not? My neuro works out of Philadelphia, Pa...at a University down there and she also has her own ALS clinic in Philly. But she comes to the MDA Clinic on Monday's that is about 45 minutes from my house (compared to 3 hours to Philly). Anyway, my point is.....it is an MDA clinic, with all the different staff like PT/OT, Social Worker, Speech, and Breathing doctor's. But most important I meet with an MDA Rep every three months there, and they ask if there is "anything at all they can do".....heck, they even installed a stairglide in my house free from the loaner closest.

I really hope you find the right person to speak with, I get all my stuff and mailings from the MDA......but I also somehow ended up getting mailings from the ALSA. It could be because the doctor that does my EMG's is from a hospital that is an ALSA hospital (again it is closer than driving to Philly, and my neuro trusts the doctor that does them). So they are both fully aware of the PLS from the EMG results each year.

Added - I am sorry this just bug's me....First, the word "Dystrophy" in MDA can be defined as abnormal developement and weakness (that should be enough to qualify for the MDA). Second, if the National Institutes of Health website can recognize it, then it must be a true neuro/muscle disease. And finally, and I don't want to upset anyone with this, because my daughter also had to have her tyroid removed due to cancer. But there are many different levels of cancer that fall under let's say "cancer survivor category", she is considered to have had cancer. Maybe, PLS & ALS should just be considered as the same category of "Motor Neuron Disease" in the eye's of all the different organizations?

 

[momap53]

The support from ALSA and MDA seems to vary a great deal from region to region across the country. I think a lot depends on the funding that they receive and the folks who staff them.

 

[Nancynurse]

From what I read I guess I am lucky, my neuro is a ALS specialist and is the MD for an ALS clinic, she thinks PLS and ALS are in some way related. The bigest diference is ALS progresses in months to years where PLS progresses in years to decades. So I am a pt in the ALS clinic and attend the ALS support group in Salem, OR. which is part of the ALS assiciation - Oregon & SW Washington chapter.

 

[kevinw]

From what I read I guess I am lucky, my neuro is a ALS specialist and is the MD for an ALS clinic, she thinks PLS and ALS are in some way related. The bigest diference is ALS progresses in months to years where PLS progresses in years to decades. So I am a pt in the ALS clinic and attend the ALS support group in Salem, OR. which is part of the ALS assiciation - Oregon & SW Washington chapter.

I guess I am also lucky the same way, my neuro is an ALS specialist and believes they are 100% related. It must be hard being stuck in such a small group and not be able to find support. I feel terrible DesertGypsy and others, just because we are a small group "in limbo", doesn't mean anyone should have to stand on the sidelines without any support.

I would expect that this forum is the main support for a lot of people with PLS....I don't know?