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Mediasmart

Distinguished member
Joined
Nov 4, 2013
Messages
391
Reason
PALS
Diagnosis
08/2013
Country
US
State
NY
City
Orient
I was referred into the Lou Gehrig Institute at Columbia Presbyterian about 2 months ago. Based on their findings, my case has gone from my local neurologist to them for the duration.

My EMG came back not in my favor although as I have Type II diabetic neuropathy, there seems to be a pile of data to sort out and of course the monitoring/retesting every few months. He says things are positive for ALS but is stopping short of the "official" diagnosis for reasons not terribly clear but since it makes no long term difference, there isn't much to understand.

I started loosing voice projection about 3 months ago with the swallowing difficulty, minor but constant drooling at the corners of my mouth and now fasiculations...not often but I can feel them and they showed on the EMG.

The business started last winter with some atrophy and lost of motion/strenght in my left hand that was at first treated by a hand surgeon who did the Ulner Nerve and carpal tunnel surgery with absolutely no effect other than a more rapid degeneration. Now I have fasiculations in about half a dozen places (intermittent), walk like a klutz and have lost a lot of mass here and there.

That's where I am this morning, finally joining the forum. I don't feel sorry for myself. I'm more concerned about those around me who know about it.

Any tips on relieving their stress and angst would be appreciated.
 
In my opinion I would l have a sit down talk with them. I would explain what is going on and how you feel about it. I would tell them I am still me and will continue to be. My body may be breaking down but I am not defined by that.

I would explain that I may need help later on and I will tell you when that time comes. I would tell them to treat me the same as before all this started. I would tell them I love them more now than ever and thank them for their concern and now is not the time for worry. This is what I did with my family and it seemed to help quell their fears.
 
i found that when i take safety issues in hand and take needed precautions to prevent falls and show them what i've done that it helps to relieve some of their worries. ie.. hand grab bars in bathroom, clearing pathways, having ramps installed so no steps.
 
Welcome to the forum.

Like you, I worry more for my husband and family - this ALS thing, sure is taking a toll. Luckily, I have a large family, so the pressure is spread out somewhat. Initially, my family was a tad overbearing. Once we discussed it - we found a new rhythm. I try hard not to complain - but when it does have to come out - no matter which sibling, each is superlatively understanding. Worrying the most about my elderly parents (93) but their resiliency in the face of this is amazing.

I have done a whole lot of research about this illness, so I do try to prepare my family ahead of the next shoe dropping. For me, this works best.

You will get lots of support here and a few laughs too!
 
And you and others help me tremendously Elaine - much much so. Thanks for information and support here. It helps me cope better.
 
And you and others help me tremendously Elaine - much much so. Thanks for information and support here. It helps me cope better.

ditto that from me, Elaine!

Mediasmart, your story is very much like mine, but I started a couple of years earlier :). Hang in there. I just did a 'bucket list' visit to family in Michigan and it all went pretty well. Awareness, not sympathy.

Max
 
Max -

" Awareness not sympathy!" It's such an accurate description of my feelings about this.

Mind if I borrow that line?
 
Thanks all. I had a really good day today until, of course, I tried to turn on a light switch and didn't have the strength in my hand or flex in my left arm to turn it. Oh well.

On a brighter note since the fingers on my left hand (2 of them anyway) go "down", I've been able to type and continue my work and today was a good day of it.

As my mom always said, "I don't fear tomorrow as I have seen yesterday and that was bad enough".
 
I like what your mom said, its a good saying. You should put that in your signature..
 
I really like that saying! There's truth there.
 
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