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ceegee

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Joined
Aug 26, 2008
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20
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Learn about ALS
Country
US
State
nj
City
deptford
My mom has been diagnosed for about 6 months now. She is barely moving her legs and sits in a recliner 24 hours a day. She gets up to go the bathroom in the commode next to the chair. We just ordered an eletric chair and hospital bed so she can sleep better. The disease is starting to effect her arms and hands now as well. I've noticed her voice is not as strong as it used to be. Is this a new symptom?

The one question i have is how is she going to go to the bathroom once her legs can't support her anymore? Can anyone relate or does anyone have suggestions.

What about excercise? I do range of motion excercise but does that really do anything? Also, her legs are soo stiff. She is taking 60mgs of baclophen for the stiffness. Any other meds recommendations?

she is on rilutek but i hear so many pros and cons. your thoughts? if its only prolonging your life for 2 months, is it worth it? my mom doesn't know this so i'm struggling to tell her or not. any kind words on that?

thanks for your support and this forum. it gets me through the tough times.

CeeGee
 

beccag

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Joined
May 25, 2008
Messages
25
Reason
Loved one DX
Country
US
State
WISCONSIN
City
foxboro
answers i hope

hello there...my name is becca..my mil has als and was diagnosed a year and a half ago.
she has the als that causes dementia along with it.
she has lost the use of her legs completely, arms almost all the way and the muscles in her upper body are fading. her voice is much sofetr now and her cough ability is very weak, no force behind it.
thats just a quick overview w/where she is at....as to your question about the bathroom as your moms legs weaken...you will need a transfer belt for around her waist...and a little training on how to transfer her to the commode safely. as she loses ability to help, you'll need two people for transfers. it is very sad.
as for the exercise...that may help w/stiffness and keeping her Range of motion as good as it can be...but all it will help is possibly to keep her comfortable longer. she wont regain what has been lost. unfortunately...
my mil was on rilutek, but stopped it due to severe diahreah. she decided that it wasn't worth it for her, but everyone has to decide that themselves.
i am very sorry for the world you have now entered...it is a hard journey and has lots of mixed emotions... sometimes its hard to get your questions answered-this forum is a good source....just to hear others experiences.....gives you some comfort. we have found that the one thing we have seen is that when she takes a turn downward, the drops down are usually big, and we're always shocked by how big they are...but thats the problem w/this disease. it is hard...but if you have anymore questions...feel free to post...wishing you well...
becca
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
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NW of Toronto
Hi CeeGee. Sorry about your mom. Last May I fell a couple of times and the Occ. Therapist said no more standing, walking before I broke something serious or worse caused my wife to break something and we'd both be screwed. We started to use the Hoyer lift loaned to us by the ALS Society. I get transferred from bed onto the commode chair and then wheeled into the shower and then into my wheelchair. My 2 year old granddaughter knows how to hook up the straps and knows which is up and down on the remote. They really are easy to use.

AL.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Hi Ceegee...sorry for the situation you are now in. I am, by comparison, in the earlier stages...I have had my symptoms for a year, but was DX in March 08. Baclofen...talk to your doctor about the dose. I was told to take 60mg...which was way too much for me and made me worse...I am now on only 10mg per day. 60mg just knocked me out, could hardly move and it made my swallow and speech worse. My physio told me it was way too much as well...I am not saying it is too much for your mom, but it is worth checking. I am still just mobile indoors but my speech is all but gone. One thing I found for the toilet is a disposable urinal, with crystals in it, so that the liquid turns to gel. Google Funky John disposable urinals They are maybe not suitable for all the time, but may help to reduce the amount of lifting and transferring when everyone is feeling particularly tired.
 
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