Status
Not open for further replies.

Patchesgus52

Active member
Joined
Apr 1, 2014
Messages
56
Reason
PALS
Country
US
State
Fl
City
Margate
Hello, Als was confirm 02/14 it probably started around 07/13 it did get my total attention until 12/13. On the day of confirmation 02/14 I drove 40 miles from the hospital to home. My only physical problem was muscle twitching and some atrophy in my left hand and arms. 6 month later (now) both my arms a very weak it's is hard to roll over or get out of bed. Need help dressing and taking a shower is a family event. Have fallen a handful of times flat on my face arms are useless breaking the fall I am kind of beat up. I do use a wheel chair or walker most of the time legs are very weak. I fell at Walmart today it hurt but something clicked in my head this Als thing is getting serious now. I am still in a bit of denial after to that denial is GONE. My question is if this progression is normal (fast or slow). I understand each case is different. Any input is appreciated and will be taken with a clear mind. Don't be afraid to be honest as you have always been
Take Care
Patrick
 
>Have fallen a handful of times

Patrick, falls will kill you before your ALS time!

Remind me, are you a vet, have a cals, etc.?

Welcome to the club, sorry to meet you here.

Kind regards,


-----
Max - Tuesday, August 05, 2014 4:47:23 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Yes Max I am a vet. The VA has been a great help. What's a Cals. Thanks
 
cals = Caregiver for ALS patient. Often = wife/spouse.

do everything you can to avoid falls. You should be able to get a PWC from VA by this point. Take all advantage of VA; Max and I (and many others here) do.
 
>You should be able to get a PWC from VA by this point. Take all advantage of VA; Max and I (and many others here) do.

if you haven't yet, contact the pva asap!
 
>Take all advantage of VA; Max and I (and many others here) do.

Greg, have you tried the new secure messaging on MHE yet? one msg, rx refilled :). a whole new va!
 
Patrick: I was diagnosed 10/13 and like you it began in my left hand about six months earlier Now I can still shuffle the length of a room, hands still work but the grip force is down to 16lbs in my left, too weak for hard buttons, my torso has great difficulty keeping me upright, and I use a bipap for naps and at night. In February my doc thought I was progressing "relatively slowly". At my last visit in June the matter was not raised. I didn't need to know. As you know one can plateau at any time. Sound to me,though, and what do I know, we both may be right in the middle of the averages.
 
Max, yep! but keep an eye on the rilutek, once the prescription runs out it takes a bit of effort to get it back in place!

Patrick, to echo what Max just said: if you have not yet hooked up with the PVA folks, do so ASAP. No joke, they can see the status of your benefits and requests, and are invaluable in getting things done.
 
>but keep an eye on the rilutek, once the prescription runs out it takes a bit of effort to get it back in place!

I still get that at the HP clinic -- 90-day supply, $7.50
 
PATRICK: Most PALS have respiratory issues at the end. We were told to use the pulmonologist as our guide to longevity. They can measure your ventilation capability over time and give some estimate as to the speed of your lung's progression. Your ALS Team at the VA should include a pulmonologist.

If I had to guess about your ALS progression from your description, I would call it average. But of course, that's a SWAG. (Silly Wild Ass Guess)

PVA (Paralyzed Veterans of America) is a godsend. If your local PVA rep isn't satisfactory, just call the national number and ask them for assistance. They're really positive and know who to call to get things done.
 
I feel for you, Patrick. I was diagnosed January, 2014. But I've had it around a year and a half and am already wheelchair bound with only a tiny handful of things left that I can do myself, example: type with one finger, control PWC. Anything that requires any kind of finger/arm strength has to be done for me. I'm 46 and feel 106. Plus, I have every other symptom of ALS, and all of those worsen weekly. It's f'ing scary. I use humor a lot to cope. I find that if I accept my many limitations, it's easier to laugh at myself when something goes haywire. Obviously there is nothing funny about having ALS, you can't get anymore serious than being terminal, but in my life with my aides, family, and friends, we have done some hysterical things involving transferring, bathing, dressing, etc. I'm just one of those people that believe, shit happens, you go with it, or you can be miserable. So I go with it with a smile. This does NOT imply I do not get frustrated or depressed or feeling sorry for myself because I omost certainly do. But I try very hard to take a deep breath, say to myself that, it is what is, nothing is going to change it, therefore I have to accept it. But, I do NOT have to like it. I have great difficulty speaking and will use the written (typed) word as an expression, through journaling and poetry. One does not have to be an English professor to do these thing. I write what I'm feeling in the moment and anything that pops into my mind. It is satisfying (for me) to type rows and rows of the same thing, "FUUUCCKKK MEEEE!" or "F**KING F*CK F*CK F*CK!" And then I look at it and smirk (mostly). I honestly do feel better than before. The moment may not last long, but it's something for me.

These things, for the most part, work for MY personality. We are all our own individuals just like each pal's progression is different.

Hang in there, Patrick!

Here's a joke I made up and texted to my best friend:

If a caterpillar (her) and a snail (me) were in a race,
The caterpillar most assuredly would always win.
But, if a caterpillar and a snail IN a PWC were in a race,
The snail most definitely would win every time.
Eat my dust, b**ch!

I know, it's lame but I did it with all the pictures and symbols in my phone... it was cute and it made her smile because she was having a stressful day.

Kim
 
Kim, the ALS may get your body, but not your spirit! THANK YOU for sharing your courage. It reminded me of Max trying to up his wheelchair speed to keep up with his dogs when they run/wheel together! The coping skills shared in this forum are so inspirational. A VA neurologist/ALS specialist said to us that people who get ALS are invariably very healthy people ( ironic that they are healthy- except for being terminal!). Anyhow, think he could have added that they seem to be brave, resilient and creative in dealing with this disease. Thanks again for making me smile. We surely need all the smiles we can get these days!
 
Ok I finally gave in I got asked once to many times today how I was doing. Mr response: great except for the terminal illness. Guarantee that place won't ask me again. Felt bad afterwards but it really bothers me when someone asks . I've really withdrawn since my diagnosis.
 
nebrhahe53, that's a normal part of grieving, for yourself or someone else. I remember after my dad died (probably while he was dying as well) wanting to jump over the grocery store checkout counter and hurt someone when they told me to "have a nice day". Ahem. "How are you today?" just got them a blank stare while I tried to find something un-crazy to say. Usually ended up with a mumbled "OK".

It's just so hard to deal with the fact that the world goes 'round, without you, without your loved one. The whole ****ing world should stop and notice the tragedy that is unfolding! Right?! Right?
 
Status
Not open for further replies.
Back
Top