Stupid question

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Susan10

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Joined
Nov 26, 2011
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189
Reason
PALS
Diagnosis
09/2011
Country
US
State
OK
City
Bible Belt
OK, my good hand/arm is starting to show weakness. I hope it will be as slow as my bad one, about a year, but if it's not, I have a stupid question. For those whose both arms have gone, are you able to stay by yourself when your spouse must go to work? If so, how do you manage ADL? If not, who is with you to help? TIA for your very good wods of wisdom.:-D
 
thanks for asking this question because I am in precisely the same position. Dressing is already a challenge, but at last I can still feed myself. Let's see if we get the advice we need.
 
Not there yet, but please take this up with your OT at the next Clinic visit. They should have some tip, techniques, and devices to assist you as you lose function.
 
Richard might be able to answer you. He has lost the use of both his arms. I'd think it would be very difficult to do things like eat and use the restroom without some help without the use of at least one arm. Voice activated things like phone, etc would be one suggestion.

A companion to just be there with you might be an option--not as a caregiver, but just someone there in case they are needed?
 
I have lost the use of my hands and arms and am losing my voice also. Everything has to be scheduled. My bathroom breaks are about 4 to 6 hours apart and I've trained myself to stay pretty much on schedule. That way my husband can put me on the computer that I am able to use with my SmartNav head mouse system, hook up my Life Line alarm button, and leave for a couple hours for shopping or whatever. The schedule also determines how long I can go out for rides also. Works for me so far.
 
Thanks Magpuff and others. My biggest concern is toileting when no one's here. My 3-mo clinic visit was last week but our support group is tomorrow night and you can bet i'll bring this up. My ex is my caregiver and he has to work for us to survive. Nearly all nmy friends work or live too far away to help. I did hear of someone who was single and organized a 7-day rotation of a caregiver team so each person stayed with him 1 day/week. I'll let you know the responses from my group tomorrow. Maybe Richard will see this and add his 2 cents...
 
I can't stand or walk, but can use my hands and phone. This allows my husband to make quick runs, getting in and out of a car is way too much some days. I wear a depends with a superabsorbant pad, No other choice at this time, so if I have to go, I just go and don't worry about it.
 
Over the last year, I've lost both hands/arms as well as voice. Use iPad with hat-mounted mouth stick for most communication, am learning to use head mouse.
I don't stay alone for more than a couple hrs. Husband recently retired. Before he did (ad for breaks for him now), we use a network of friends/family. Important to be aware of who is companion-level (fix meals, feed, do things around house) vs. who can transfer, toilet, etc in addition. Our bidet-toilet-seat makes it so much easier for other people to help toilet!
So far we've done ok. Kindle and iPad , and I'm happy for hours.
Good luck ad keep asking questions!
Sue
 
Thanks Sue. Yes, that's an imporant difference. We're looking at an ipad and the bidet. I wish the remodel was finished!
 
Update - my support group met Tuesay evening and I asked the quetion: how many of you stay alone while your partner goes to work? Of the 30 or so who were there, only 4 raised their hands. Of those 4, 3 are bulbar onset and still have good arm/leg strength. The other one said his arms are still good enough for self care. Several others talked about how to hire inhome assistants or how their caregiver manages for them.
 
Well, my legs have gotten substantially weaker in the last month. I can still stand and walk but sit to dress. cant walk very far. i'll look at your sites. thanks! we are just about to get an ipad...
 
I have lost the use of my hands and arms and am losing my voice also. Everything has to be scheduled. My bathroom breaks are about 4 to 6 hours apart and I've trained myself to stay pretty much on schedule. That way my husband can put me on the computer that I am able to use with my SmartNav head mouse system, hook up my Life Line alarm button, and leave for a couple hours for shopping or whatever. The schedule also determines how long I can go out for rides also. Works for me so far.

When I could still walk but couldn't use my hands I had my sister to make me full skirts that open down the back like an apron does. When you sit down the skirt spreads open. Who said we have to wear panties, my sister in law has told me for awhile that she hasn't needed them and she will soon be seventy
 
I manage for now, but I’m starting to use my walking stick in the home now as I’m constantly stumbling and nearly falling as my right leg gets weaker. My right arm, is no good now and the wife is ready to stop work at a moments notice, hope you get sorted
 
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