Info you would have wanted in a PLS forum sticky

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Tokahfang

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Guys,

I am writing up a sticky for the PLS forum. I know some of what I will include already:

- A welcome to anyone with primarily UMN symptoms
- links to the SPF, PLS-Friends mailing list, resources like that
- some basic info on PLS

Thinking back to when you first arrived, what you you have wanted to see in such a sticky, what would have been of help to you?
 
A common questions section. Where experiences are gathered in an easy to read format.

For example proved remedies for cramping, fatigue etc.
 
Believe there are no PROVEN remedies. Some work for some but not others. It's been said before, each PALS is different.

I do supplements with success and no scripts other than azilect for ALS. Many have no success supplements.
 
There are proven symptomatic treatments for PLS issues - antispastics, things like that. Thanks for the input!
 
An explanation that PLS is a rare variant of ALS and how the two differ
 
Hello all, new here. Tentatively diagnosed with PLS in january by a Johns Hopkins ALS specialist, though noticeable symptoms just over two yrs, possibly more. Different from many here, mine started with left sided decreased dexterity in extremities and 'jelly thighs.'. Still have use of all limbs and extremities, though compromised mostly on left. Haven't used assistive devices yet but spasticity and balance are getting slowly worse, and I limp somewhat.

Not sure what a sticky is but as a new comer I've been searching threads to see what people's initial symptoms have been, how they've progressed, what if anything they've found to help symptoms, how they manage day to day difficulties, ratings on assistive devices and where to find them, tips on dealing with potential housing issues such as renovating, etc., tips on traveling with a disability, interesting outdoor accessible locations to travel to, etc. and more. It would be great to have topics separated and easily accessed. Otherwise, this has been a super helpful site. People here have great attitudes and are very inspiring. Life hasn't ended, but it sure is changing.
 
I agree with Trippy. Having a specific place to find info on newly diagnosed "to do"list would be great! I know i will get direction from my clinics, but hearing the DO and don't from people living it would be great! I really feel there is a need for caregivers to have more help and I'm wondering if there is a thread for different cities for volunteer caregivers? There are so many people out there wanting and willing to help, but may not know where or how.
 
Thanks for the input, all. Please keep it coming, even after the sticky is up, I can always edit it later.
 
That HSP shares similar symptoms and might need to be considered as a differential diagnosis.
 
New comers to PLS or HSP...

Unlike ALS which may be diagnosed within a matter of months or even weeks with the sudden failure of a muscle (as written often on this Forum) PLS takes years (generally 3 to 5 years) to diagnose. If a visitor has NOT yet seen a neurologist or has just begun to be seen by a Neurologist... they are FAR from a diagnosis of PLS.
 
I would add that you need to learn to slow down, It seems a lot of us are type “A” personalities, always moving, trying to get as much as we could into a day. With PLS that does not work, you need to take what the day allows you, learn to slow down and listen to what your body is telling you. It will tell you what you can and can’t do. Take it from an Ole Sailor there seems to a certain joy and peace to taking things slow, you notice stuff you never seen before and you learn to appreciate those special people around you even more. I finding myself (very slowly) adopting a new outlook on life that maybe a lot of the crap I worried about before, wasn’t worth worrying about in the first place or didn’t need to done perfectly right now, it can wait. Enjoy life, there is some pretty cool stuff and people out there.

What maybe a different take and I may have missed what you are looking for, but this has been and continues to be the hardest part of coming to grips with a MND that I have. I still don’t do it very well, and beside just hurting me I think it has a negative effect on those close to me as they watch me struggle and fail, and then have deal with me afterward.

Mike
 
I would have like to have seen, just because I didn't have firm diagnoses at the time. I was still welcomed and able to ask questions (which I was), without feeling like I was an outsider in a secret society. That PLS is something that will present in many, many different ways and nobody has any concrete information here that applies to each case.
 
Kevin, I agree with what you wrote. I should have worded my post more considerate to those in "diagnosis limbo". Mine started out with an initial diagnosis of Chiari Malformation Syndrome over 4 years ago. I think it was just two years ago I heard MND for the first time.
It wasn't until PLS was mentioned that I learned about ALS and this Forum.

Yes, I say "Welcome Aboard" but you may ride on the slow train called the "Diagnosis Limbo" for a few years. :)
 
Hi Beky,

First, thank you for doing this - what a wonderful idea!

Just wanted to make reference to the "mind-body" connection -- i.e., our mental and emotional well-being clearly affect our physical well-being. In so many of the posts here (including my own), I see direct or indirect evidence of underlying anxiety and/or depression.

(Quite ironically, while I have the above insight about the mind-body relationship, it is merely an intellectual one -- somehow, knowing it doesn't stop me from experiencing the anger, anxiety, and sadness that we all feel -- each and every day -- because of this disease).
 
Mike, I agree but I want to make this note... there is a closet that many doctors (and Neurologists) today want to throw too much into. It's called the depression closet. There is a difference between depression and being sad, disappointed, discouraged and the plain old simple blahs. Recently my buddy of 13 years passed away. My cat Lonesome. (Really I had to have him euthanized.) I was sad, very sad yet people and a doctor seeing me for a few weeks after would say... "you're depressed." No dammit... I was sad (still am). Recently I had a doctor tell me I was depressed in a 20 minute office visit after me being up all night with Lonesome before he had to be put down. The doctor was witnessing fatigue, sadness and disappointment that I knew what was going to have to be done. (Lonesome's med food wasn't working) But the quack in 20 minutes of office observation diagnosed me as depressed. No... I was tired and sad. If that's depression let's remove sad, disappointed, discouraged and all other words similar from the dictionary.
 
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