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Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
City
Campbell River
Sorry I have not been posting lately. A few issues have come up, so I am here now. I tried searching the threads for info, but mostly got “do I have ALS section”. So here goes:
1. My arms have been getting weaker, hard to pinch, lift arms over shoulders, left hand slower than right hand. Unable to wash/dress etc.

2. My sleeping sucks, I have upped my sleeping pills to 2 per night. Still have excruciating pain most days in hip and knees. Will be asking for a hospital bed :(

3. My OT and Nurse want to discuss going into a facility if we do not get a grant for the porch lift. They feel I will be house bound, as far as that goes I am already house bound unless I have someone to help.

4. Went and saw the respirologist, my FVC went down to 73%. My breathing is shallow (little breaths) and I cannot blow out all the air in my lungs. I am on a puffer when needed for my coughing fits. He also said I need to quit smoking and lose weight. He wants me to decide what option for ventilation to do.

So any input or direction on 1 or more of the above I would appreciate, thank you.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Michelene ... I'm surprised at the advice to lose weight. I think it's pretty standard advice to NOT try to lose weight or diet with ALS, as part of successfully fighting ALS is keeping your weight up. Please check with your neuro before starting any diet.

As to the vent: certainly we need to think ahead for issues that we may be facing later in the progression, but don't let anyone pressure you into making decisions too soon. An FVC of 73% is not a crisis point. (I'm at 41%) Do a search and read Joel's messages on living a full life with a trache. This is a very big decision, and a personal one.

About sleeping pills: I take them, but I know that by taking them steadily they lose effectiveness, and you have to keep upping the dose. I take a low dose of Ambien CR for a few nights, then take a break and take an OTC sleep aid for a couple nights, then back to prescription Ambien. So far, this has kept everything being effective (for a couple years). I go by my calendar ... If I have morning appointments, I take an Ambien so I fall asleep fast. Otherwise, I don't worry about it taking longer to go to sleep, as I can always sleep in.

I'm an ex-heavy smoker, so trust me, if I could quit, anybody could. (I quit 30 years ago, with a two-pack a day habit.) It is really, really hard, as I'm sure you are aware. No advice on this, except that when I started on BiPap, it gave me the same "oral satisfaction" as smoking! It was the deep inhales I got with BiPap that were so soothing! So maybe that's a way to cut down or cut out ... when you get the urge to light up, spend a little quality time with BiPap instead. Just a thought.

Good luck with all this. You've got a lot on your plate.
 
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joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I quit smoking in 1983, and I was double Beth. Yes, I was smoking 4 packs a day.
But the cigarettes are much worse today.

Anyway, it is an excellent idea to quit smoking!

But loosing weight is an absolute NO NO!

Personally I think the suggestion of going into a facility is not reasonable. I don't get the fealing your husband is not prepared to keep you at home.

Have you talked to the ALS Association concerning a lift?

With an FVC over 70% you don't need to make any hasty decisions, but I would start to think about a vent so you are prepared.

Anymore questions? Ask away!
 

GlenBrittle

Very helpful member
Joined
Oct 9, 2008
Messages
1,530
Reason
PALS
Diagnosis
10/2008
Country
CA
State
Ontario
City
Alexandria
My dealings with the ALS society is that they dont provide for porch lifts or any construction to the house. Chairs / lifts / devices inside the home is what I can ask for.

But it doesn't hurt to ask , being you are in a different province.

Is your respirologist part of your ALS team ? I am shocked about asking you to lose weight.

Glen
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
We are working on getting a porch lift from the ALS Society of Alberta so it is something that varies between the provinces.
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
I think the major issue for us is that it is up to the second floor. We have a 2 level house but everything is top floor. We have a Acorn Stair Lift inside the house but with her diminishing upper body strength she finds it difficult to hold herself in it. There is a seat belt but she doesn't feel secure. I am in the process of working up some kind of 5 point harness like race car drivers use to give her that security but would need lots of help to transfer. We either rebuild the deck with a huge gentle sloping switch back style ramp or find a lift that would go that high. Approx 12 or so feet or more. This way she would be able to use her powerchair upstairs. As of right now she can only use a manual chair on the main floor and her powerchair when she wants to go out on her own. For the car we take her manual chair as well as the powerchair cannot fit in the car.
 
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