PALS and sticky hands

[scaredwifetx]

For the past few weeks Steve has been having a issue that is not only driving him nuts, its also now driving us nuts.

He is constantly wanted his hands and fingers washed. He says his hands and fingers are sticky. He doesn't eat normal food and only drinks shakes. He doesn't have much use of his hands so does not use them much. He isn't sweating. We have tried different soaps. Medical washes, powder but nothing works.

Today I tried looking it up and seen something about a C02 condition that may be causing it. I don't like relying on the internet for advise. Steve is only suing his trilogy at night so am wondering if he needs to use it more, if we should be concerned and or seek medical care. He's on hospice and we have mentioned it to the nurse and she just gave us another cleaner.

Has anyone experienced this with or as a PALS?

 

[affected]

Didn't have this one but CO2 build ups can cause lots of strange sensations.

Do you use wet wipes of some kind to just clean his hands over? Probably just giving them a wipe over and reassuring him is as much as this needs. Make it a nice contact moment so he relaxes about it.

 

[Jocalyn8]

He is not crazy, I have same issue. I changed soap and no effect.

ALS is the gift that keeps giving.

 

[scaredwifetx]

Tillie, We have tried hand wipes along with every kind of soap we can think about. Sorry Jocelyn that you are going through it. We do have a co2 measuring device and his Hospice RT also checked it. He's going nutty over it. We put baby powder on them and it seemed to help some but he told me today that it made his hands feel dry and it made him imagine his lips and nose being dry. He seems to be mentally ok except for this sticky hand obsession. I don't know what else to do.

 

[Nikki J]

Do I understand correctly they are not truly sticky? In more advanced disease a small subset of PALS experience spread to sensory involvement. If this is the case I wonder if a trial of some neuropathy medication might take the edge off??

 

[KimT]

Maybe Karen and Laurie will comment but my first thought was what Nikki said. Sometimes my feet feel like they are crawling and tingling. It isn't fasciculations, even though I have them, too. Massage only helps temporarily, then I take a Neurontin and that helps.

FWIW, baby powder makes me feel like I can't breathe. It is very fine and has an odor. I tried it on my hands once for playing pool and I had to wash it off immediately. I have, from Day 1, had a lot of sensory symptoms. One clinic thought it was a different condition in addition to ALS and another said it was just part of it.

 

[KarenNWendyn]

I was also wondering if his hands are truly sticky (ie do others feel it?) or if it’s just something he feels. This could be analogous to another thread we had a while back about some PALS smelling odd odors that no one else smells. If so, I like Nikki’s idea about using Gabapentin for possible sensory symptoms. Tegretol might also work. Check with your neurologist.

My palms feel sticky in the creases when I get spasticity (seems to come and go). This has improved with Baclofen. However, your neurologist might have some insight into your particular situation and what might help.

 

[lgelb]

I agree that low-dose gabapentin might be a place to start, if you have exhausted low-tech options like massage, glycerin, ice cubes, analgesic or steroid cream.

 

[affected]

Oh I realised they were not truly sticky, but was suggesting wipes and just making it a moment for some nice contact, rather than thinking the wipes were going to truly solve the issue. I was thinking that getting him to a basin to actually wash them could be more energy sapping or traumatic, while making a nice moment with the wipes would not.

Meds may help, so may day time bipap. All the suggestions here are well worth investigating xx

 

[scaredwifetx]

Hi Everyone. Sorry if I made sound like the sticky hands aren't real. They are we can feel them.

 

[KW1234]

My toes felt sticky for a long time and now my fingers. In my case it is because I cant move my fingers independently any more on my left hand and the fingers feel like they are sticking together. I am seeing a hand therapist next week and will be getting hand splints. I wore toe socks for a while to deel with the toes and then silicon spacers but I eventually got used to it.

 

[Nikki J]

Is it the whole hand ( backs too) ? If not maybe low grade fungal infection? My sister had this and used apple cider vinegar every few days ( I believe diluted 1:1 with water)

 

[affected]

Oh, yes I thought it was sensory and not real and definitely I would suspect fungal infection as PALS commonly have fungal issues. Chris had a lot and I had to watch his hands carefully as they clawed and so moisture was trapped in them easily.

Start apple cider vinegar if you have any but I would get them looked at and consider an antifungal cream to put on daily.

Really important to carefully dry in between fingers and toes and any body creases when a PALS is not moving independently to help prevent fungal infections.

 

[scaredwifetx]

Thanks everyone. I am going to try Apple cider. We make sure to dry his hands but what everyone is saying makes sense.

 

[affected]

Let us know how you go.

What we found is that PALS don't have good control of their body temperature, and they often go from cold to hot in a way that doesn't add up to how you as CALS may feel. The extremities seem to be really involved in this and so hands or feet can heat up and cool down. This can cause some sweating in the hands when they warm up, or if they are covered up when cold and then begin to warm - particularly when they don't have a lot of hand movement anymore.

Fungal invasions happen really easily. I don't know why PALS are susceptible to fungal infections to begin with - it's been discussed here and often PALS start with funny dry and itchy skin areas well before mobility is affected, often early in the whole thing. So it's like the predisposition is just there.

Hope you can find something that works. Chris didn't complain of sticky hands, but his skin sure changed in different ways over his body.