Husband diagnosed

[SLAUGHTER1555]

Hi to everyone my husband was diagnosed May 2015 and it has been something to say the least. I had to quit my job and do care for him, his income is the only income but of course we have more bills than income right now. He needs so much attention it would be hard to get a care giver plus he doesn't want one. My biggest trouble is at night he has the hardest time sleeping he has speech issues as well, not too much trouble with swallowing. He still has use of his arms and hands a Lil weak but they are the strongest of his body. His legs and back is our main issue in this disease. I want to know is numbness apart of this. His right side which is the worse his foot and toes are numb and tingling. Sorry if I came off rambling have lots of questions and no one to talk to about this. Thanks

 

[SLAUGHTER1555]

Re: Bed time questions

My husband has terrible nights too but we don't have issues with suctioning or any kind of tubing. He only has a bipap right now but he does not sleep! Because of the struggle to move around in bed he wares his so out. He has trouble getting comfortable we have like 10 pillows in the bed and I have 3 of them but he never gets comfortable. All I can do is just stand there and try to help. I'm a bus driver but because we would be up all night I had to quit ever night is different I just try not to get frustrated specially when I'm tired cuz he takes longer to decide how he will lay down.

 

[SLAUGHTER1555]

Re: Bed time questions

Have some questions. So at night my husband can only sleep so long on his back and right side. He said it doesn't make it hard to breathe buy it hurts he call them pressure points? Is this apart of ALS?

About 3 weeks ago we had a PFT and they said he was at 43 percent his neurologist called and suggested He get a PEG but we declined so far he doesn't have any real issues with his breathing. Sometimes I question if we made the right choice but we are choosing to trust God.


He also does this gagging thing like when he's nervous or scared he gags like a person about to throw up. Haso anyone experienced any of this? Plz help

 

[lgelb]

Hi and welcome.

To answer some of your questions, numbness isn't a part of ALS specifically but can happen because someone isn't moving the way they used to. For foot drop, an AFO that your clinic can provide may help. Pressure boots in bed at night may also help.

Pressure points are common because the cushioning most of us have from muscles and fat is gone/has shifted as the muscles atrophy.

Does your husband have a hospital bed? A mattress overlay or topper? Those usually help.

You can ask your clinic to ask an occupational therapist and physical therapist to come out to your home and suggest things that could help you take care of your husband, and make him more comfortable. But if you have specific questions that don't depend on seeing your home, there are always people here happy to respond.

Often, if you use the "Search" link in the blue menu near the top of this page, you can find posts from the past that will help you.

A PEG (feeding tube), as the neurologist may have mentioned, is best placed before someone has difficulty with swallowing, because people who lose a lot of weight and only then get a feeding tube usually do not do as well. So BiPAP and the PEG work together to keep someone with ALS breathing and eating as well as possible, for as long as possible.

Gagging has many causes. Sometimes medications can make it better. If it is related only to stress and being scared, of course, the first line of defense is to talk through what is causing the stress, and trying to take stock of all the kinds of help (friends, family, the clinic, other doctors) that you might be able to accept.

Best,
Laurie

 

[SLAUGHTER1555]

Thank you so much for your response it helped a lot a makes more sense why he can't get comfortable with the pressure points. No we do not have a hospital bed thinking about getting one tho. And no topper or anything like that we bought a memory foam pillow but he has such a hard time sleeping it's like nothing matters. We just take it day by day. Again thanks for your help.

 

[Nuts]

Welcome to the place nobody wants to be...but the best place to be if you must. The hospital bed will help. We have an adjustable split king and I added rails to both sides of my husband's side so that he can pull himself over in bed. The adjustable bed allows him to sit himself up and raise his feet. He's very uncomfortable in hotels with regular beds...to the point that he'll soon be sleeping in his chair when we travel.

Many Pals need help sleeping; perhaps your husband's doctor could perscribe something to help him.

You've come to the right place for answers.

 

[Barbie]

Hi and welcome. I see you have a lot on your plate and you are very scared. it helps just to talk and ask questions. we do care and everyone here has experienced the things you are experiencing. Sleep is the worst thing--my husband too. I know you will get lots of ideas and help from members. Hugs