Help me help my Dad... Again

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kcoy17

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May 17, 2014
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3
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Loved one DX
Diagnosis
01/2014
Country
US
State
Texas
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Bastrop
Something new that has been happening is that he's having shoulder and neck pain. It's so bad that he's crying out in pain. What is this and what do we do to stop it? I know yall told me about the bipap machine. He tried it for one stinking minute. He says this is not a headache. HELP!
 
Is it due to cramping or something else? What drugs is he on? (baclofen, gabapentin, etc.)

Gentle massage. Warm heat.
 
If his neck and torso muscles are weak and he is not getting support that may be the issue. Does he have a neck collar? If he tried and did not like it there are other kinds to try. Is he properly supported in his chair? Both his neck and his torso? Maybe he needs pt or ot to eval
 
Something new that has been happening is that he's having shoulder and neck pain. It's so bad that he's crying out in pain. What is this and what do we do to stop it? I know yall told me about the bipap machine. He tried it for one stinking minute. He says this is not a headache. HELP!

It has been said that BiPap is like sticking your head out the car window at 80 and trying to breathe. Mom's doctors are using a "wonderful" combination of Fentanyl patches, Morphine pills, Neurontin, Oxycontin, and as needed Dilaudid injections for her pain. I cannot remember your previous post, but apparently ALS can be painful at the end stages.
 
If the shoulder muscles are weak make sure the arms are supported at the elbow. I always sit in a chair with arm rests, never one without. If the arms are not supported they pull down on the shoulder joint causing pain. Suspect neck pain related to shoulders. Learned this the hard way
 
don't let him suffer in pain...call his doc and see what they can give him. I give my husband Aleve but he doesn't have severe pain. you need to try and get ahead of it and not try to catch up to it. it is easier to control than get rid of in other words. don't wait until he is crying, make it a regular dose to manage the pain .
 
I don't see a reason to suffer in the end stage: The CALS and PALS have dialed in the comfort zone of the bed, chair and lift by then. When you're bedridden, you can be fed air, O2, water, food, and medicines by tube. The proper meds given in proper doses at the proper time can prevent a person from feeling pain, fear, thirst, hunger and air hunger.
 
I don't see a reason to suffer pain at any stage of ALS.

You need to have him checked by both a doctor and OT to find the source of the pain and help him deal with it.

As everyone has said - support for arms, upper torso or head may be a bigger key than meds, but meds for pain can be worked on a regime that does not mean they then have to be bombed out.
 
I don't see a reason to suffer pain at any stage of ALS.

You need to have him checked by both a doctor and OT to find the source of the pain and help him deal with it.

As everyone has said - support for arms, upper torso or head may be a bigger key than meds, but meds for pain can be worked on a regime that does not mean they then have to be bombed out.

Tillie

Yes, but don't be surprised if the regime needed takes several pain meds. Especially if there were problems such as joint damage, arthritis,skin damage, or other injuries prior to the ALS. Just seems to compound if there was any other underlying conditions.
 
Indeed GilWest, my Chris actually refused most pain meds, he seemed to feel that suffering in pain was part of how he was fighting (he did have FTD).

But at the end, once I was giving the pain and anxiety meds the way I saw fit, he had a very peaceful, pain and fear free ending.
 
I would add that my husband is having random spasms in his left shoulder and upper arm muscles. He is losing his use of it. The only thing we have found to help is warm wet towels followed by gentle massage. Gentle range of motion exercises cant be done for this side unless the towels and massage are done first. And as Dalvin said, the support for the arms and elbows is really important.
 
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