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Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
Well, sorry I haven't posted in a very long time. :?: Our last visit to the ALS clinic was ok, we took our kids with us, they didn't say much but did talk a little with the social worker. (teenagers :roll:). My left arm has been decreasing, i am not able to lift anything over 1 ltr or even above my shoulder. Since then my right arm is starting to decrease as well. bummer. Thank goodness for spell check...lol My breathing dropped from 104% -91%, but was told still good.

I have upped my home support to 3 times a day. Man, that service I was not looking forward to. The home support people have complained about my transferring onto the toilet. Told my OT as we wait for the estimate and install date for the lift in the bathroom.

Since, i have been having so many issues transferring, I had to cancel my respirologist appiontment, contacting my ALS team and inform them I will not be going anymore. It's way to hard on my husband to do it, and if I end up hurting him i would never forgive myself.

we are going to try to get to the walk, keeping my fingers crossed, but it looks like I'm stuck in this town that i donot like, never liked...crap!

well that's it for now, have an awesome day everyone :-D

Micheline
 
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crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
Micheline,

I'm sorry that you are having transferring problems and hope that you can get your bathroom lift soon.

When you say your ALS team are you referring to the clinic.

I hope you can get to the walk, I will keep my fingers crossed for you as well.
 

Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
Yes the ALS clinic in Vancouver. Getting to hard with the drive and ferry.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
Micheline -

We're in the same boat with the transfer issue. Only two people, my husband and 17yo daughter, can get me on and off the toilet. It's been 10 months since I've used a toilet outside of my house so I must limit my travel. I have to schedule my fluid intake around the availability of help in the bathroom. I'm showering only once a week because that transfer is so scary. I've fallen/been dropped several times during transfers which hurts me and upsets whoever was helping. My husband's back is sore all of the time.

I'm also waiting.....for a track lift and roll-in shower. The work has been rescheduled twice. I can't complain since the folks doing the work are donating their labor but I really hope this gets done soon.
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
Hi Liz and Micheline. Can you get a Hoyer lift from ALSA or ALS Society from loan closet. We use one for all my transfers since last year. No tumbles or risk of sore backs.

AL.
 

Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
Hey Al,
We are waiting on the ALS and the company who has to install to corridnate(sp). We do have to pay for the installs ourselves. I finally got a catheder(sp) so alot less transferring. I told my OT for a commode for now, she's working on it.

Liz, I was in/still in the same boat. We still limit our outings, but it has come to light that the outings are now next to none, maybe once a month. I have hurt my husband back a few times, I feel horriable about it. The what if's start to happen! When i was limiting my fluid i noticed i wa getting more tired and not doing anything. I was drinking about 500ml every 2-3 days. if we went out i didn't drink the day before and day of just incase. As far as showers, i can't do them anymore, i can't remember the last time i had one. It's so hard on home care, that they even told me not too. Quaility of life, at this moment I don't think i have any, i have been in the house for over a year!
 
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eireannach

Member
Joined
Jun 4, 2009
Messages
19
Country
US
State
OK
Hi Micheline,

We used a Hoyer lift for quite awhile and it definately helped. Both for Trish and me. Transfer was difficult untill we did. She used a walker until her legs couldn't be strong enough to make it to the commode. When she couldn't take showers anymore, we were at our wits end, until our son came up with an idea.(This was between trying to get home health care approved and actually getting it!)
We bought 2 kiddy pools and with the help off the port-a-potty and 2-3 gallon plastic flower watering jugs, we had quite the time! Crude, but effective! I can look back on it and laugh now(not in a bad way...) but at the time. Her cathater helped also her getting out, but then the only time she would leave the house was for weekly chelation treatments 60 miles away.(have you heard of that?)

Anything I can do, please let me know. I'm praying for you!

God bless you,

Greg
 
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liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
Micheline -

I think you need some pampering. Those aides are only covering the basics and just barely. Can someone maybe help you get out to a salon for a nice hair cut, a manicure and pedicure, maybe even a facial? Beauticians have a nice way of taking care of you that doesn't make it feel like a chore.
 
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