Feeling of hands around the neck

[Scotiaspirit]

I require more support for my neck muscles now. Spent three weeks in hospital in June with pancreatitus and enlarged spleen (it happenned just a week after getting my button inserted).

I been getting bold headaches in the back right quadrant in my head. My neck muscles are weakening and I get the sensation that someone is holding their hands clasped around my neck and a wet cotton ball sensation (the way I describe it) in the back of my throat when I swallow saliva. The VON nurses have noticed changes in my face, I been getting puffy cheeks which they noticed in several other ALS patients they had over the years. Biting my lower lip more frequently too.

My physiotherapist has me working with different balls to help deal with the cramping in my fingers when they curl. It is getting increasingly difficult to hold them out straight at all.

Things have seemed to start accerlating for me since June.

My family members are having a tougher time coping seeing my body going through these changes.

Hope everyone is doing as well as possible.

Paul

 

[chally]

Hey Paul,
Sorry to hear all this medical stuff your going through.
I too , feel the downward spiral!
Hang in there pal,thinking of you and sending good energy your way.
Love ya
Chally

 

[affected]

Do you have your head supported at all times? I know it's easier said than done, but braces, pillows and reclining may take a little pressure off the neck for you.

 

[NothingButLove]

I fully understand the part about family members having a tougher time coping. Watching my wife go through this is soul crushing. No matter how hard it is to watch, I will support my wife as long as I'm alive.

Thanks for sharing Paul. Try to enjoy today, tomorrow and the day after that. It so hard, but we have to remain positive.

Rob

 

[KimT]

Paul,
Have you had massage on your shoulders and neck? Even though your muscles are weakening, they can still get knots. Gentle work on your shoulders and neck might lessen the headaches. I've had a longstanding neck pain problem and working on my shoulders and upper back releases the tension in my neck. I also take extra magnesium when I overuse my neck.

 

[affected]

Massaging magnesium into the neck and using heat if the head is well supported could also help.

 

[Scotiaspirit]

I try to keep my neck supported by pillows, head/neckrests etc as much as possible. Travelled in my brother inlaws truck for 3 hour drive on Friday and return yesterday. Today have a bothersome headache. My OT is going to bring different types of neck braces for me to try, hopefully, one will fit good and help alleviate these headaches.