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Mike in Maine

Distinguished member
Joined
Oct 18, 2013
Messages
244
Reason
PALS
Diagnosis
10/2013
Country
US
State
PA, No longer live in ME
City
Pocono's
Good morning, I’m new to the forum and this is my first post (been a reader for a while). A little about myself, I’m a 30 year Navy vet, was a big runner and gym rat before all this started about 5 years ago, it is amazing to see the drop in activity. Now just weed whacking the yard causes hands and trunk cramp, I have to take a break every couple of minutes. The spasticity is the worse; the meds seem to help some. Enough of that, my Doctor says he has it down to two things PLS or HSP, (personally I think PLS). The Doc said he would call it PLS it I displaced more muscle weakness, I have terrible muscle fatigue, it seems my arms and shoulders some days get fatigued just while I’m standing. Do all of you experience noticeable muscle weakness; I have experienced some but can still do a lot. I followed Wendy’s post from a few weeks ago; her initial post nailed almost every one of my symptoms. Looking forward to you reply’s, thank you.
 
Talking about weakness is a funny thing, because how it defines medically and how it is defined in English are different.

Medically speaking, PLS and HSP both cause spastic weakness early in the disease, and then possibly flaccid weakness very late in it. (Many people stick with spastic weakness for their whole life.) When "weakness" is used by itself, the meaning defaults to flaccid weakness, generally. As an additional factor, the drugs that control spasticity induce flaccid weakness. Another wrinkle - if what you have is indeed HSP, one of the very common complications is direct muscle problems. My HSP is mitochondrial, for instance, and long before I had spasticity or any neuro symptoms in certain areas I had limited use of them anyway due to terrible inflammation. I had to alternate hands when writing for instance - 2 paragraphs right hand, 1 left, to make it through school.

Speaking in the english meaning of the term, PLS and HSP cause all sorts of shades of weakness. Remember that spasticity means your muscles are fight against each other instead of working together, which burns energy (guys with really bad cerbral palsy have to eat 4,000 calories a day to keep up their weight to healthy) and fatigues you. Trying to work on anti-spastics makes you weaker. Pushing through it all leaves you exhausted. Overusing your good limbs makes them tire faster.

The good news is that you will get some functional ability back as you learn to live with your particular symptom set. You will figure out what postures you work best at, the muscles that are working well will become strong, and you will learn to do things with good crip techniques instead of trying to pretend to be able bodied. This can actually trick onlookers into thinking you have become healthier, so watch for that. The truth is, UMND's are something that someone can become skilled at dealing with. Tons of folks with problems with the UMN's, most of them from spinal cord injuries, have come before us. Literally every single little thing you might want a better way to to do has a youtube video or ten of people doing it in different ways. As long as you are willing to keep learning, you can stay very active and get done what you want to get done, for the rest of your life. You might have to pace yourself more than an ablebodied guy would, but what you prioritize you can suceed at.
 
Beky

I have a question. What is HSP? I am going to the dr on 24 oct and he told me I have mitochondrial myopathy, are these related some how?
 
I so much wish we had a like button as I really like Beky's post! Hit it on the head of the nail with that one!

Learning to relearn how to do things is the key to survival longer with this. Over the 20+ years I have dealt with PLS, I have definitely learn much in how to do things differently so I can continue to do them. Some things eventually I had to just give up, like doing set designs and building for the local theatre house. But I replaced it with doing their photography for 5 years. I just had to finally give that up last season as I could no longer stand and shoot even for short periods of time. Thus now I only take pics for the travel agency business that I started a couple years ago because it was something I could do from home in front of a computer. So thus, do and adapt to what you can do for the longest you can do them. You will be surprised at what you can accomplish, even with the "weakness" or fatigue that comes with PLS.
 
Beky

I have a question. What is HSP? I am going to the dr on 24 oct and he told me I have mitochondrial myopathy, are these related some how?

It is short for "Hereditary Spastic Paraplegia", though it isn't always hereditary.

HSP is an interesting critter. It is an upper motor neuron disease, but it isn't purely a UMND. It has "complications", other things that go wrong. Last I checked, there are 43 known genetic causes for it. Interestingly, they don't seem related to each other. Some genes give HSP by buiding mitochondria wrong, some by building neurotransmitters wrong, some by building other things wrong. But somehow, these many diverse DNA issues cause alongside their complications a pretty unified, predicable UMND.

Some days it feels like the body is just waiting for an excuse to have HSP. ;) Once it does, in addition to whatever else happens, the UMN's to the lower body and occasionally upper body die over time. So think PLS, more about the lower body, and with non-MND complications.

I happen to have a genetic variant of SPG7, which builds mitochondria whose job it is to scrub misfolded proteins out of my cells. My mutation of SPG7 is unique, but I have experienced all of the common complications that a mutation of SPG7 tends to bring - vision problems, diminished feelings in extremities, muscle inflammation, etc. My mitochondria issues mosly affect my nerves, yours affect your muscles directly. I'd imagine the muscle inflammation side effects of mine are the only place where our conditions relate.
 
Mike,

I also have extensive arm and leg fatigue --- I've posted this elsewhere, but it often causes shortness of breath -- not because I have documented heart disease, but because of the over-exertion. I was also a terribly avid runner and weightlifter, and liken the feeling I mention here to that of not being able to press one more rep when doing a biceps curl -- it becomes impossible no matter how hard you try. This happens to me when I do things like dry myself off or fold towels (common theme there is "towel" - there might be something to that... :wink:). It's a really weird thing...of course, this disease is weird.

Mike
 
Sorry for naive question but I'm new to the forum and was wondering if someone can instruct me how to create a new post. I went to FAQ but still do not know how. Thank you.
 
Find the subject you want to post under...."Do I have ALS", "Happiness Now", whatever one you want and click on it, a blue button at the top of the page that says start new thread, click on it and write what you want.

If you want to post an answer to someone else's thread click on the little box by the name on the right of the page and use the quick reply box and when done click the post quick reply button at the bottom.
 
Got it and thank you.
 
Mike, welcome aboard. Sorry you have to be here though. This has been a wonderful place for me, as you can see by my past posts.

I'm still trying to figure out how to conserve energy by doing things differently. I have to sit down when I dry my hair so I'm not using up energy by standing and holding my arms up. For some reason standing in one place is much harder than walking around. Of course my arms still get weak and I'm having a harder time getting all my hair dry, but at least my legs aren't wobbly at the end, too.

Just different things we have to figure out how to deal with.
 
Mike,
Even though it may be PLS, ask your doc to refer to it as ALS in his notes and files. This will insure automatic approval for SSDI, wheelchair approvals etc. seriously, this will be very worth a discussion with him
 
Mike, are you going to the VA for this?
 
All
Thank you for the great answers and suggestions. As I head down this road it is great to know that there is a place to turn find answers and support. Hope you all have a great week. As for the the VA not yet, going to finish the process with civilian doctors get all my ducks in a row and then submit to the VA
 
the va does not acknowledge pls as being service related
 
I'm still trying to figure out how to conserve energy by doing things differently. I have to sit down when I dry my hair so I'm not using up energy by standing and holding my arms up.
Just different things we have to figure out how to deal with.

I wear a buzz cut, so drying is not necessary in my case. For a friend with arm trouble, though, I bought a stand that holds the hair dryer for her at 3' over the counter height, and that worked for her. You could even dry your hair while reading a book or something, it could be a relaxing time. ;)
 
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