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Mike in Maine

Distinguished member
Joined
Oct 18, 2013
Messages
244
Reason
PALS
Diagnosis
10/2013
Country
US
State
PA, No longer live in ME
City
Pocono's
Mark,
Decided to start a new thread on this. Man sorry to hear about the fall, hope you're doing better. When did you fall, what were you doing? My left ankle and calf have gone down hill a lot faster then I thought they would. Using a cane whenever I go out except when I walk the dogs. Just not coordinated enough to do the leash and cane.

My anxiety has gotten bad it is almost like another disability, the VA Doc wants me to try Nudextra again. Hopefully the spasms stay under control and I'll see some success. I'm willing to try anything to fix this, would just like to get back to the adept and overcome days again. Also I see a VA head Doc here next week see if that helps.

If anybody else has any thoughts on this subject please chime in, Well enough whining for now.

Mike
 
Do you have an afo? Ankle and calf are my bad areas too and my afo makes all the difference.
Really sorry about the anxiety wish I had advice for that
 
Roger that, regarding the AFO. The AFO has made a huge difference in my life. - - seldom use a cane anymore, though suspect I should. The VA first provided an AFO for my left foot which, unfortunately, created a balance problem. Thanks to a very observant technician a second AFO was ordered for my right foot. Problem solved ! Still have foot drop, much less of a problem.
 
Mike, when you see the shrink, remind him when he's picking anxiety meds that you wouldn't want anything that depresses the breathing functions. Watch out for side effects. Good luck.
 
They gave steve generic lexapro,,....escitalopram I think and hydroxyzine pamoate. The escitalopram is for anxiety/depression and the hydroxyzine helps him sleep. They had him on klonopin before but switched because of his declining breathing.
 
Hey Mike......Maybe the Nuedexta will help this time. I had a very hard time getting used to it and only could take one cap per day, a few months later I started taking two out of desperation to help my EL.
It is a crap shoot on anti anxiety-depression meds. I have tried Prozac, Zoloft, and now am on one Wellbutrine per day (spose to take two, but don't wanna go totally in LALA land).
The only way to know is to try them out for 3-4 weeks until they kick in. When you go to clinic ask your doc what he recommends for your symptoms.
There is an ANGST that goes along with terminal MND's. Similar to the "deer in the headlights" syndrome, and not being able to have long term plans, goals, and aspirations. You always hope there is sumpin you can take to make it go away and still be functional.
The AFO is an interesting dynamic.....wonder if a person could still drive and have any kind of balance with them?
 
My balance is fine with my afo and I am certainly less likely to fall. Driving is not an issue as I fortunately have automatic transmission and left leg afo. I suspect I COULD drive but the legalities would scare me. My afo is carbon fiber by the way the foot plate is only a tiny fraction of an inch thick The other kind is thicker if I remember correctly ( my sister had one)
 
I have AFOs on both legs. Huge difference and no problems with driving, you just drive with your whole leg.
Vincent
 
Just to keep it clear for others, Steph, the hydroxyzine pamoate is an old antihistamine that also helps with sleep. It's not normally the first choice of sleep agent since it can slow everything down, but whatever works for Steve.
 
AFOs have really helped Jeff--he's doesn't have to be quite so careful and cautious ALL THE TIME now about picking his whole leg up high so he doesn't trip. (That in itself seemed to reduce his stress.) He also uses a cane with them because his balance seemed a little off once he got them. It does mean he doesn't drive--felt like the "whole leg" driving just didn't allow a quick enough response for braking, etc., in all the traffic. But he seems so much more relaxed moving around now. They are the carbon fiber also, with very thin foot plate.

Mark, most of our household is on Welbutrin. It's very helpful, but we're careful to only take it in the morning unless it's extended release. It will disrupt sleep if taken later in the day. (It affects the dopamine receptors rather than the serotonin like many of the other antidepressants.)

Jeff swears by the Neudexta, He had bulbar onset and EL was one of his first symptoms. Neudexta has helped that tremendously, but we know it is different for different people.

Mike, glad you came on to talk about some of the challenges so many are dealing with. Hope you'll keep exploring till you find what helps.
 
All
Thanks for the input on EL issues gives me ammo with I talk to the Head Doc next week. I' am getting fitting for an carbon fiber AFO at the end of month really looking forward to it. Hopefully I'll be able to loose the cane for awhile

Mike
 
That's great Mike. For what it is worth I have an ottobock walkon reaction. It has tons of support for ankle foot drop and calf. My only issue related to comfort due to anatomy and lucky me not significant atrophy yet. But after a couple of adjustments it is better
 
hey mike i have two braces and they came thru VA. they work great and i can drive with them even my truck w/ clutch. that's a lot of drugs you all mention and it goes to show we all all different physically and have different needs,what works for one might not for another.so important to share our collective experiences.hope you are getting on the VA for all the other things eg. van, pwc,lifts,hisa grants, sah grants go for all of it. you deserve it and will need it. later chally
 
Thanks laurie! The doc didn't really explain it so well and many months down the road all I could remember was it was for sleep and the lesser of.evils for Steve. The others they recommended had too many other non-breathing side effects .
 
[QUOTE=4tloml;

Mark, most of our household is on Welbutrin. It's very helpful, but we're careful to only take it in the morning unless it's extended release. It will disrupt sleep if taken later in the day. (It affects the dopamine receptors rather than the serotonin like many of the other antidepressants.)

Cindy.....how are you dosing the Welbutrin? I am supposed to take two a day, but only take one. If it affects sleep I can't see how a person could take it twice a day.
Thanks
 
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