Progressing ...

[handinhand]

:sad:Hi , I have been going along thinking that with bulbar onset, that I would be gone way before I would need any of the equipment that folks starting with limb onset need...today I have realized that I am losing the use of my arms and hands.....pondering on what to do now? No arms..no making my bed, emptying dishwasher, pulling myself up, so hard getting dressed..getting up and down from a chair.brushing my teeth , my hair, on and on and on......what are the first things I need to purchase to help make life easier? Very melancholy tonight.... :-(any help very much appreciated......hugs, Linda

 

[Phil M]

Hows your breathing Linda?

 

[joelc]

WOW, I am sorry to hear what you are going through. I don't know what to recommend. I planned for the worst and hoped for the best so had everything in place long before I needed it. My wife was able to soften the journey as I did not have to think about the same things women do.

Specific questions?

 

[Miss]

These are the things my husband used in the beginning - electric toothbrush, back scratcher, long handled scrub brush for the bath, universal remote with large easy to push buttons, cups with handles (that his hands could slip in), shirts with a pocket for phone. We are getting ready to look into hand braces that will hold utensils and stencils for the computer. There are so many things on the market now.

 

[pepsiman]

Oh Linda, I'm so sorry to hear this. Liz wasn't bulbar, the first and best item would be an electric toothbrush. I bought Liz a SonicCare and it was worth every penny (and it did cost a lot of pennies), but there are cheaper out there that would probably be good enough. Another thing that helped a lot was a pole in the bathroom next to the toilet. They are just like a stripper pole but there is a short extension at 90 degrees that you can use to help lift yourself up.

Dick

 

[handinhand]

Hi Phil, my breathing is not real good. I have the bipap with oxygen all night. During the afternoon for a couple of hours.. When I had the peg placement a couple months ago .. They measured my breathing test in low 20s. My Nero thinks it is higher than that because of the problem with the test being accurate .. So I just have to guess it is in the 30s.

 

[luvnmm]

Dick - what do you know of stripper poles?

Linda - my mom's left side was first affected by the disease. She found the electric toothbrush was a lifesaver but has had some issues with gagging while using it. There are velcro braces that you can get for your hand that will help you hold utensils, pencils, etc. I saw one tonight at the ALS Support Group. There are also rubber type thingy's that you can put a pencil in, or put a fork/spoon in that helps to make it bigger around and therefore easier to grip. They are similar to those things you can slide your pencil in to keep it from rolling off your desk. Saw one of those at group, too. I'll get with the leader of the group and see what else there might be to help you out. Please try not to be too melancholy - I hate to see you that way.

 

[Phil M]

I'm bulbar too, and have weakening in all 4 limbs, but knock on wood, I can't tell that my breathing effected. If so...not much. My throat, and mouth are toast.

 

[JeffP]

oh linda i feel so sorry it seems like your the first friend i had here on this forum and we would laugh about sounding drunk.then you had to have a peg tube a month later i had to have one .im not at that stage as of now but i feel so bad for you and me too would have the same concerns you have .it breaks my heart i will say a prayer for you my friend god bless you linda jeff

 

[BarryG]

Linda, you and I are so close in progression and it is awful. I sm starting to have real issues with my arms and legs and like you it is all too much to deal with. I also need to start working on how I am going to deal with feeding my peg tube and all the brushing, flushing and suctioning when my hands don't work anymore. At least with bulbar I don't have to worry about holding knives, forks, or cups because I have no need for them.

Take care and although I know that it is not much help, please know that I am right there with you. Just when I figured I had this whole not eating not talking thing kinda sorta a little bit figured out I have to start figuring the not walking no hands thing out. Every day is a day at school but I'm putting off graduation day indefinately!

Barry

 

[irismarie]

Strangely enough I reckon an electric wheelchair might help< at least it would stop the pain in your shoulder as you can rest your arms along the gutter armrests, which are adjustable so you are quite comfortable. Then if you are sitting it gives you more of a stable base to do the other things you need to try
Plus right now you could get out whenever you want. But it would save you energy;

Takes me two hands to hold a cup of coffee to cough over now and drop more things than I can hold. It is quite funny really, we started this at different ends and are sort of ending up meeting in the middle

I just thinikg to make life as lazy as poss do try a chair, especially now when you can tell yourself you do not need it.
LOve you

 

[rose]

Linda,

I understand.

If you look online at the sammons preston catalog, there are a few grooming aid devices. However, for hair drying, other than a wall or table mounted stand for the hair dryer, there is not much. If you SIT when you're doing your hair/makeup, and rest your elbows on the surface of dressing table/counter... A standing appointment with your hairdresser is an idea. She would most likely cut you a major break in usual fees if you're coming in on a weekly basis just for a wash and style.

There are spoons which have a loop for the hand so that they are held in place and cannot be dropped.

Maybe a bed rail at your side of the bed to help with turning over. (I'm ordering one) I have a tempurpedic adustable queen sized bed, and even though it was expensive, it really helps with night time comfort, and during the day I can get my legs elevated during a nap. I have a good amount of pitting edema in my legs, and even though I really don't understand it (after it was explained to me, LOL) somehow its related to muscle weakness, irregardless that I'm completely ambulatory

I'm sorry you're down about your progression, its completely understandable, and feeling overwhelmed at times is more "normal" than not.

 

[JeffP]

great advice rose thats what i like and love about this forum we are a group of people dealing with the same illness and there are those that have been there to share some good pointers that even a nurologist woulnt know well maybe some good looking out rose and for you mny friend linda all will work out for the good believe in that godbless my family

 

[handinhand]

i want to thank you more than i can express. I have grown to love each of you as if you are my second family..I will look into these things and Rich an I will get them in place and learn how to deal with this next part of this journey... Big Hugs, Linda

 

[Ladyinn]

Linda, I'm not bulbar, but have NO movement in my left arm although the fingers still work for typing. My right arm is beginning to weaken and I am finding it difficult to get food from the plate to my mouth. I have found the electric toothbrush to be a real help but am still searching for a toothpaste dispenser that requires minimal pressure to operate. I have handrails all over the bathroom, a transfer pole in the bathtub and shower room, one by the bed, and a third by the chair I sit in most of the time. I have finger braces and a leg brace and use a walker with an electric wheelchair for major trips out. Hope this gives you an idea of where to start. This sucks. Diane