3 years since PLS diagnosis

[LouLou]

Here’s where I am at 3 years with my PLS:

• 2009
o Started in left leg, then right (foot drag, falls)

• 2011 – June – Diagnosed

• 2012
o Started using a cane
o Hands next –weakness and fist clenching at night – wear braces for this
o Emotional lability (laughing and crying episodes)
o Several falls (to date there have been 15 – no broken bones, just bruises)

• 2013
o Visited NIH – in study of the history of primary lateral sclerosis
o Baclofen pump evaluation (oral Baclofen made me very sleepy)
o Surgery for Baclofen Pump & Catheter implant (happy with this!)
o More falls – not good when pump and catheter are implanted
o Began using walker – cane was not supportive enough
o Went on short-term disability

• 2014
o Speech problems began – slowed, hoarse speech
o Discontinued working
o Sudden progression of spasticity – including tongue, jaw & throat spasms
o Baclofen pump increase helped control new symptoms
o Beginning to have swallowing issues – swallow test scheduled
o Looking into voice banking
o To NIH for a follow-up visit (study)

I am living day to day and rely on my faith to get me through this and to manage the changes in my body. To me, the progression seems to be quicker than what I expected, but there is no “normal” progression. I count my blessings that this is not looking like ALS. I’m thankful for my great doctors and nurses and trust them with my care. Hoping and praying for a cure! Blessings to all of you.
LouLou

 

[IhavePLS]

Hi LouLou,

It's good that you kept track of your progression like this. Everyone is different, but because my own progression has been pretty insidious, I can only give approximate timeframes in which I first experienced a given symptom (and my approximations would most probably be wrong). I've certainly had periods of time (such as in the last 6 months to year) in which I've experienced more rapid and clearly more aggressive progression.

I just saw the neuro who confirmed my diagnosis of PLS in 2010 (he is excellent - he is highly recommended by the SPF). He could not explain the pain I have in my neck, shoulders, lower back. The best way to describe it is to say that it feels like the muscles are pulling very hard -- in opposite directions. Can't sleep because of it. I get so frustrated because NO ONE can pull all of this apart - and give me that "magic pill" that will give me "time off" from this.

I worked in the healthcare industry for over 30 years, and while I acknowledged it, I never quite "got it" -- until I was the "patient": The core problem with healthcare is that care is all too fragmented in the sense that practitioners don't talk to one another very well (if they even do), and so underlying issues are overlooked and -- and worse, never addressed. Common sense tells us that any single practitioner does not -- and can not -- know everything. Once again, the result is that underlying problems are often left undiscovered.

The reason I say the above, is that my neuro's answer to my pain was: "You should see a rheumatologist."

Me: "OK, but what do you think's going on here?"

Neurologist: "I don't know."

And my neuro is one of the BEST, folks. One of the very BEST.

And yet.....on and on (and on and on) we go....

Mike

 

[Schmutz]

Mike,

I too have pain in my neck, shoulders, and lower back. I haven't mentioned this combo to my neuro yet. I'm not expecting any help but somehow, even though I hate that you have pain, it helps me to know that I'm not just crazy.

If I learn any thing that helps, I'll let you know.

Anne

 

[IhavePLS]

Thanks Anne!

TxRR mentioned in another thread that we should be careful attributing symptoms to PLS. I agree with this, certainly.

However, I think most of us are aware of what is PLS-related vs. what is not. On balance, a PLSer's state of well-being changes (often quickly, often more insidiously) over time. All one needs to do is to compare pre-PLS well-being with post-diagnosis well-being. The difference is largely (not completely -- but largely) attributable to PLS.

If I didn't have this condition, I'd still be running, lifting weights, going to the movies, etc, etc. I do none of these anymore --- and I can assure you that this AIN'T out of laziness (I'm from SW Pennsylvania -- I use the word "ain't" fluidly). Yesterday, I mowed grass -- and I pretty much did myself in. But as long as I CAN mow grass, I WILL mow grass. I will continue to press and to push -- as long as I can press and push.

Mike

 

[IhavePLS]

Thought I'd add to my post above, because this morning, I went for a walk and I began to ruminate over the progression of my own PLS symptoms (parenthetically, I thought about how interesting it is that we all express our psychology here in some way; we do so as much as we discuss our physical symptoms. Whether we do this overtly or not-so-overtly -- my post here is overt in this sense, I can sure you...so read on if you want to really know what's going on in my PLS-afflicted peabrain).

Back to this morning: As I walked, I thought about how much of a chore walking has become for me. I love to walk because walking happens to be the next best thing to running (which I loved so much to do - and which I used to tell people I'd being doing at least into my 70's).

But walking is hard. It is work. And like work, I now think about how I walk. It's no longer the subconscious thing that I used to take for granted -- I really do have to think about it (forget about running - I view that as a very special skill set).

That difference in approach to something that is as simple as walking, I think, captures pretty well what is meant by "progression."

Mike