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tledfh

New member
Joined
Jun 6, 2018
Messages
4
Reason
Loved one DX
Diagnosis
07/2018
Country
US
State
IL
City
Grayville
My PALS has just been diagnosed and not had their first visit at the ALS clinic where they will meet with all of the specialists, occupational therapists etc. she had neck surgery 9 months ago and symptoms increased after that, she was diagnosed with locked shoulder and treated for that for well over 2 months, as her weakness of both arms continued.

She has gone from working a job of 40 years and driving, and tKing care of a home to, unable to work, no ability to drive, and can barely lift her arms In a matter of 3 months, she tires so easily, has difficulty breathing at times, can not sneeze or cough, clear her throat. She walks with very little difficulty, everything is in her arms, chest, and neck.

This is all very new to us and yet seems to be pretty advanced already, we have no idea on things to make her life more accessible and so far all I have researched is geared towards people losing strength,use, of their legs. My PALS can not readjust in bed already, having trouble raising utensils and glasses to her mouth etc. please any help on where to even get started, she has got to start getting some rest. Thanks
 
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Hi, I'm so sorry to hear about your PALS. She is fortunate to have you here trying to figure out what to do to make her quality of life better.

It sounds like she will need a pulmonary function test and a BiPap prescribed. Most of us here end up using a Trilogy, which is a form of non-invasive (BiPap) machine that helps a PALS breathe. Some of the benefits are more restful sleep, increased energy during the day, and life extension. A few elect invasive intervention once the time comes and a Trilogy can also be used for that. At the time the BiPap is prescribed, a cough assist machine can also be prescribed. This will help clear secretions and it can even be used to help keep lungs expanded.

It also sounds like an evaluation for a feeding tube might be necessary. Many doctors use the baseline pulmonary function test to advise when a feeding tube is necessary. Others rely on the ability to swallow without any problem. The doctors I've consulted with use a combination of both measurements for their recommendations on when to get the tube. Getting a feeding tube doesn't mean she has to stop eating orally. It just makes it easier to stay hydrated, take meds and eat (when the time comes.)

That's where I would start. Staying ahead of progression is challenging so getting together a good support system will only help.

I would also get involved with your local ALSA support group as they might offer you valuable information.

We're here for you and your PALS. No question is too big or too small.
 
Hi, Illinois, very sorry that you find yourself here. My husband also had the kind of ALS that starts in the arms.

You do not want her to lose weight/nutrition. So if she cannot feed herself, you will need to feed her. Long, thick, wide diameter straws and finger foods may help her retain some independence for a while, as well as any kind of adjustable table (laptop stand, H table, etc.) where you can adjust the height of her food.

If she cannot reach light switches, there are plastic pull handles that can be installed. Google "adaptive aids" or "adaptive products" for some of these things, or you can always ask here; there is a wide variety of experience. I posted a good jar opener that is on Amazon the other day.

There is also a good handle for getting out of the car as core strength declines. You may want a bath/shower stool or bench, and a toilet riser to help her get up.

As Kim says, a feeding tube is something to look into at the point at which swallowing becomes difficult.

If she cannot readjust herself, it is also time to look into a hospital bed so that she will not need to be flat, which also makes it more difficult to breathe. She may also need extra padding under her elbows, hips or knees for now, to be more comfortable. There are also portable bed wedges you can try -- one kind that goes under the mattress and another kind that is more like a pillow, on top of the bed.

As Kim said, trouble breathing signals the need for a pulmonary function test that will justify a BiPAP. If that process takes too long, you can get an rx from any doc and buy a gently used machine (not the Trilogy, but one that will work at home) on line. I am always happy to answer questions about BiPAPs and settings.

I've already listed too many things for now. One step at a time. We will support you however we can.

Best,
Laurie
 
There is help!! My husband has BAD which is a form of ALS and has affected only his arms/hands. He lost his ability to drive, eat and take care of himself with his daily living skills. We just received a robotic arm from the ALS Organization....what a wonderful invention!! My husband ate a meal on his own last night! We also got our house voice command activated so he will be able to call 911 if needed for help.
I STRONGLY suggest contacting your local ALS Foundation!! They have been so wonderful!!
 
Certainly check out your ALSA chapter. Is that what you meant Jillie? Be aware that the services offered and help that can be obtained vary wildly by chapter

If you are unfortunate enough to live in a place with a weak chapter there may be other organizations to turn to. In Massachusetts we have CCALS , Maryland and surrounding has the Brigance Brigade, Team Gleason helps where they can
 
Thanks everyone for all your suggestions. I am getting ready to look up about a local ALS chapter to see if they offer any support groups and educational resources. Jillee, it sounds like my PALS is very similar to your husband. She had just recieved her diagnosis in the past month and already has very little use of her arms. Thank God she has a good support system, but things have just been happening so fast and wr are all just lost as to what to do to help her immediate needs. Thanks again for everyones help. Back to the forums for all the suggestions I can find,
 
please stay in touch....I've added you to my contact list.

Take care,

Jill
 
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