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Bujy

Active member
Joined
Sep 22, 2007
Messages
33
Reason
Loved one DX
Diagnosis
Family
Country
CA
State
BC
City
Vancouver
Hello folks. I kind of introduced myself over in the mian forum. But this is a more appropriate spot for me I think.

I'm just starting to work more and help out with my MIL's care. It's becoming super difficult and realized I may need someplace to go to cry or just talk. Sometimes we have super good days and I like to talk about those too. The family just doesnt get that the ability to peel a potato is a BIG deal. It's awesome getting my MIL to help out. I get excited about these little things, but they just dont get it. They're supportive but are unable to deal with it themselves.

They have a variety of challenges and I'm going to try and assess their needs. I plan on contacting the ALS centre and asking them for help. I've been asked to go to Dr's appointments now and look forward to learning more.

Here's her story:

My MIL has ALS and is going through a progressive phase now. She has a rare form of familial ALS. She has been diagonsed for about a year and was clearly showing symptoms for a year before that. It started in her legs and now has lost all control in them. She can still maneuver herself using a little bit with her hips, but that's increasingly difficult if at all. She has very little dexterity in her fingers, but overall arm strength is still there. Respiratory and swallowing are still relatively unaffected.

Bathing is going OK with help getting from the chair to a seat in the shower and back again. But with no movement in her lower body, it's getting more difficult.

She uses a sling to get from the chair to the bed. That's worked out well. We also have a stair lift so she can still use the upstairs and downstairs. Now that her hip movement is almost gone, she often will stay upstairs where she's got a washroom, computer and tv room and her bedroom. It's not something that she can go up and down whenever she wants. It's amazing to me how much energy she expends just making a simple transfer.

She was progressing super slowly till recently. They say that this is a slow moving form of ALS and that was true for awhile. Seems like it's progressing a bit quick for the last month or so. Her arms are beginning to totally lose themselves at odd times and unexpectedly. But always comes back. No respiratory issues yet thankfully.

She says she'd like to go into care someplace when the time comes. She doesn't want to be a burden on her husband anymore than she has to. I am going to explore home care options primarily right now though. I will also see what options are out there for her later if she is not able to stay at home.

So, yah.. right now I'm in the exploratory phase. And helping htem adjust to this latest progression phase.

Thanks for letting me join you folks.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
It sounds like you are on the right path and have a good understanding of what you and your family will be dealing with. I hope you continue to let us know of your journey, as we can all help each other.

Sometimes family members are in denial or choose not to face what is happening to their loved one. I admire you for taking the time and interest to help your MIL.

I'm sure you will receive other helpful responses, but it is kinda slow around here on the weekends.

Stay strong! And keep those small moments in your heart!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Call the ALS Society of BC to find out what help is available. You can get the number at www.als.ca Ask any questions you want here. Hope we can help.

AL.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Hi
I live in your area and personally know all the people associated with ALS, they are an incredible bunch!
If you are open to talking with me I would like to help getting you in touch with everyone you need to.

If you will allow me this opportunity please respond back saying so and I will call you.
 
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