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kaumy2

Member
Joined
Jan 22, 2014
Messages
15
Reason
Loved one DX
Diagnosis
8/2013
Country
US
State
WA
City
Port Angeles
My wife was diagnosed with ALS in August 2013. She is on a bipap and has small degree of strength in her legs and in her arms, although not enough to be functional or useful. She also has had a ng tube for at least the past 3 months. She was experiencing a fairly rapid decline for about the past 4-5 months until just recently. About 6-7 weeks ago she developed a severe head drop and we started using a neck brace. About 3 weeks ago, we discovered, rather suddenly the muscles that held her head up became quite strong and when sitting on the couch she is able to hold up her head without support and pivoting and turning her head normally for long periods of time. I've also noticed some (although slight) improvement in the strength in both of her arms. She is also able to swallow 2-3 swallows of water at a time and use a straw, which she could not do otherwise several months ago. She took Riluzole for about one year until about 4 months ago when she started to progressively weaken, but we stopped as it did not appear to make much difference at that point. She has not taken any medication or supplements since then. I've been told by her neurologist that sometimes people can experience improvement in symptoms over a period of time. Has anyone had any experience with symptoms improving on their own...particularly seemingly a rather dramatic improve such as being able to hold one's head erect after experiencing severe head drop for at least 3-4 weeks?
 
My husband has had some improvement but they believe it is due to spasticity. It causes rigidity in the muscles.
 
No improvement here, but I say awesome for her and I hope it continues! I would love to hear about someone overcoming this beast!
 
I don't think there is any chance of overcoming this as it has been too devastating both physically and mentally...The AlS coordinator said she had not come across this before...another professional said that he hadn't had anyone show improvement in 2 yrs of working with ALS...The neurologist said that sometimes a patient will show some improvement over the short term. But, there has been some definite improvement in being able to hold up her head, and very slight in terms of arm strength. I just am wondering if any others on this forum has come across anyone showing some improvement, even very slight improvement. I would like to hear about it.
 
Never saw any improvement with Chris.

Can you keep us updated on the improvements and whether they last?
 
>I just am wondering if any others on this forum has come across anyone showing some improvement, even very slight improvement.

i wish :-(
 
Also Kaumy can you please go to the User CP and change your profile as it's rather confusing that it says you have been diagnosed but you are saying it is your wife that is the PALS.
 
My neuro at the Houston ALS clinic says that about .5% of people with ALS will go into spontaneous remission-of course they have no more understanding of why than they do of why people get the disease in the first place. Ive never seen or heard of anyone who's been that lucky. I hope you are.
 
Steve went thru a short period of pretty bad spasticity in his neck/upper shoulder muscles. The only plus was his ability to hold his head up more but that was due to the severe spasms.. when we massaged the muscles, applied moist heat, were able to relax the muscles at all the head drop was back in full force. Now we just have head drop.
 
Sorry...it's been changed.
 
Thanks Kaumy (I'm so easily confused!) are you still seeing the improvements?
 
People tell me my walking is better. It's not, you just learn to adjust. If my back only knew I am giving it grief deliberately, so I can walk without my stick (I like having my good hand free to use), I think it would give out all together. What I make up for in one area I lose in another...
Janelle x
 
When my initial symptoms presented my speech was really bad and my hands were so weak I couldn't even hold a golf club. I have since substantially improved but still have some areas of pretty severe weakness.

Contrary to a lot of the conventional wisdom I do have good and bad days. Here's what I've found contributes to each;

Good days:
Get plenty of rest and calories (especially early in the day)
Drink shakes with MCTs and Creatine, GABA and AAKA added in
Take supplements - Acetyl L-Carnitine, Alpha Lapoic Acid, Vitamin E and others (B12, etc...)
Daily moderate exercise
Hydrate, hydrate, hydrate... oh, and hydrate some more

Bad days:
Pushing too hard
Not eating right
Passing on supplements
Not drinking enough water

My Mother several years ago had an AVM rupture and although they were able to save her it did leave some brain stem damage that produced symptoms remarkably close to ALS (Speech, swallowing, weakness and mobility issues) and we've noticed that she tends to let herself get dehydrated (because she doesn't like to have to go pee) and consequently her symptoms worsen.

This is not to suggest that I'm "cured" but more that things can be better or worse within a certain scope depending on how I care for myself. I really notice a difference when my hydration gets out of whack.

The other thing is to keep trying things and alter "how" you go about them. I firmly believe it gives the other as yet unaffected muscles a chance to "adapt" and possibly even allow the affected muscles that are not yet dead to see increased blood flow, etc...

My $0.02 YMMV
 
I have found the same Brad. Essentially any stress on my body makes for a bad day or series of days ( overexertion, poor nutrition, lack of sleep illness). Am I correct that as well as supplements you take riluzole and nuedexta?
 
I find the same thing. After flying 15 hours last week, arriving here, etc. etc., I found my balance at its worst on Thursday. Probably the worst its been since early symptoms began. I rested as much as possible Friday and Saturday and felt there was "improvement" Sunday. My three cents worth.:)
 
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