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cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
Hi All,

I just found this site yesterday & so glad I did. I was diagnosed with ALS in late March everything is moving very quickly. I could walk a few steps with a walker in early April but now can not walk at all. I can stand about 30 seconds with a walker in order to have my husband pull my pants on or off. I can tell my arms are also getting weaker. I am sitting most of the time as my husband uses a Hoyer lift to take me from the bed to livingroom recliner or manual wc. I am waiting for my pwc and it should be another 2 months before I get it. No idea what I would do if we didn't have a Hoyer lift.

Any good ideas on what to sit on so you don't get sores on your behind?
Thanks,
Leslie
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,761
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
My husband sat on a gel cushion for about 14 hours a day. One of the tricks was that I repositioned him about every 30 minutes - just a quick little resettling. Because of our size difference, we found this worked much better for us than a full blown repositioning every two hours. He slept on a gel mattress until he could no longer stand. We then moved to a low air flow mattress. He was a full quad for almost a year and never had a sore, so we must have been doing something right!
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So sorry you had to join us, but welcome aboard.
Gel cushions are great. So is the RoHo which uses air. Doc can write a script for you. The key is changing positions at least every two hours.
 
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notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
HI Leslie, welcome to the family. So sorry you had the need to find us but so glad you have because of all the love and support we all give each other. It is my lifeline on this new journey. Ask all the questions you want, someone will have an answer for you. {{HUGS}}
 

mich5

Distinguished member
Joined
Apr 20, 2012
Messages
275
Reason
PALS
Diagnosis
01/2012
Country
US
State
west
City
mid
Welcome! So glad you found this site but so sorry for the reason. I am newly diagnosed as well and there is such support here on this site and the knowledge here is so helpful.
 

Yvon11

New member
Joined
May 9, 2012
Messages
2
Reason
Learn about ALS
Country
Ca
State
Ontario
City
Burlington
Hi, I'm new to this site. My name is Chris. I live in Burlington Ontario Canada. I am in the process of being diagnosed for ALS. I'm 48 years old and single. I am a bit of a recluse as I don't have many friends to rely on. I have two elderly parents in there 80s, a sister with fragile health in her 60s. I also have a brother who is a very busy with his own family. My symptoms started with s/o breath and weird stiff throat like symptoms. I was originally diagnosed with gerd. Then I had a pes cavus right foot, which turned into progressive leg weakness in both legs in only two months. Both legs and arms twitch and cramp like crazy. I am so scared as I have no care givers for this disease and am depressed. I feel like I will go paralyzed in my own home. I fear what will become of me since I have no money for a quality nursing home if needed in the future. I fear being at the mercy of strangers I don't know. I have yet to get the diagnoses but I know it's coming. Any pointers would be appreciated. I really do not know how you people do it. God love you, I admire all of you!
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
Hi Leslie, Mich and Yvon... sorry that you had to look for us here, but glad that you found our forum family.

Leslie, sounds like you have some good advice from more experienced folks than I. I use one of the air cushions with my pwc, and am looking for a sheepskin rug as well.

Yvon, you say you're in ithe process of getting diagnosed, have you had any MRIs or an EMG? I think right now the anxiety is going to kill you before ALS would. I also panicked when I found out that I HAD ALS, not before... I just kept skipping over the neuro sections that even discussed this. There are many other neuro issues that are not ALS, so unless you have been told you have it... don't panic just yet. The good thing is that you do have family... you have parents, and 2 siblings. Do you belong to a church, or any other organizations through work? You'll be surprised to find out the good people in this world, and ones that disappear that you thought were friends.

BTW, protocol on the forum is to start a new thread when changing the subject to yourself, perhaps Al will move this part to a new thread, and you'll get additional responses.

At any rate, welcome to the club no one wants to belong to... you'll learn that there's still lots of LIVING to do despite the diagnosis.
 

Yvon11

New member
Joined
May 9, 2012
Messages
2
Reason
Learn about ALS
Country
Ca
State
Ontario
City
Burlington
Hi, HelenL. Sorry about the protocol mistake, I am new to any kind of forum. Not quite sure what I am doing yet. Will try to be a quick learner. Pleased to meet you. I do not belong to any groups by the way. I soon won't be able to get around any way.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
Crap! Just lost my long post! Guess it wasn't meant to be. But honestly, don't dwell on having ALS until you get a diagnosis... unless the EMG tells your doc it is, live like it isn't.

Check your local ALSA or MDA loaner closet to see if they can help you out with a loaner pwc (power wheelchair) or scooter to help you get around. I'm in my scooter all day.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
Oh Leslie, I feel for you. As the husband of an als patient, your husband deserves a round of applause for taking care of you. Please tell him to be kind and gentile to you, because you did not wish this on the both of you. No matter the Hoyer, you will one day be a quadriplegic. This god awful disease does not show any mercy to anyone. Please gear yourself to that possibility. My wife stopped walking almost 2 yrs ago. I have agonized over her being pent up ever since. I have tried to put myself in her place daily, and I am mortified with the thought. God knows the tears both of us have cried since our golden years have turned to mud.
 

LizT

Very helpful member
Joined
Aug 8, 2010
Messages
1,517
Reason
Lost a loved one
Country
US
State
WI
City
Beaver Dam
Leslie- yes, alot of folks become quadriplegic, but there are alot that dont. We just had a dear member on here pass away... he had ALS for 8 years and still had good use of his legs. Dont lose hope. Ever.
So sorry you had to join us. But welcome.
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,016
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
Leslie, I would like to welcome you too to our wonderful family. Make sure you ask questions, big or small, it doesn't matter. There is always someone here who can answer it or direct you where to go.

Oh, my bad (as the kids would say), I didn't realize who you were. I met you the other day. But I called you cairn. And helen already mentioned the loaner closet. Also, the M D A group gives you a 500 dollar stipend towards medical equipment. I think I mentioned to you already about buying an inexpensive manual chair (c l, c v s, ri te aid, wal greens, et cetera). D M E places sell portable aluminum ramps. They cost between 250 for a 4 to 5 foot ramp up to 450 dollars for a 12 foot ramp. They can send a rep out to your home.

As for progression, every one of us is different. Some notice a speed up and then a plateau. Others not and still others progress very slowly. I am a new quad (6 months). Its rough, but I'm doing it. The rough part in my situation is finding good care givers.

I don't remember if you had mentioned social security. One thing you and your husband need to discuss is your life directives. What you want and don't want. And this can be changed. We had a gentleman here who did not want a peg tube and just recently changed his mind and is doing very well. The other would be power of attorney. Who is going to handle your paperwork, for medical and or financial purposes.

I know all this information can be overwhelming but you will get the hang of it. I prefer to use the notebook approach. Buy a 3 ring binder (large) and several colored pocket and holed folders and every document test result or doctors notes should be placed in there. Make sure to have a questions one in the front, so when you go to clinic its there. The others should be s s, clinic, pt, ot, rt, et cetera

Again, welcome to our wonderfully loving family.

Many prayers and much love,
 
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