New Diagnosis, Trying to stay positive

[azgirl]

I am a 56 year old woman who received verification of ALS diagnosis on December 9, 2013. It's been devastating for my entire family including my husband, two wonderful children, parents, and extended family. I'm fortunate to have all this support and that of many friends as well.

I first noticed twitching all over my body last July, followed by leg cramping in September and then noticeable weakness in my left arm and leg. I can still walk my dog 1.5-2 miles each day, although slower and with slight limp. I also enjoy light water aerobics each day in the pool (I'm lucky to live in Arizona and this past month has been beautiful). My doctors told me it's ok to do light workouts with weights. I really miss doing the kettlebell and crossfit workouts that I was doing prior to the diagnosis. I started taking Riuzole on the recommendation of my doctor at the end of December.

I would love to hear from any of you out there with advice about how to slow down the progression of this terrible disease, especially about what types of exercise you find helpful. I haven't noticed any changes over the past month, so my hope is that I stay like this for as long as possible. I'm trying to stay positive, make the most of each day and just be grateful for the amazing 56 years that I've experienced so far. It's quite a challenge as I'm sure those of you reading this know.

 

[hjlindley]

Sorry to hear about your diagnosis. I was teaching eight hours of exercise classes a week when I was diagnosed.

There are two kinds of muscle contractions con centric which is what happens when you raise a dumbbell against gravity, and eccentric which is when you lower the dumbbell against gravity. Eccentric muscle contractions cause micro tears which is how bodybuilders build muscle. It is unknown whether or not ALS patients can heal micro tears, but my guess is a certified personal trainer in both land and water, is that we do not. My suggestion to you is to keep up with your water aerobics and I'd be very careful about doing too much walking. There are no eccentric contractions in the water but every movement on land, sitting down walking squatting all cause micro tears.

I turned 63 last week, had a probable diagnosis in 2009, a definitive diagnosis in 2011, and am distal onset. I've been in a power chair since March 2013 which is helped my fatigue. I believe the only way to slow this disease down is to not exercise except in the water. You can't compare yourself to anyone else each case is different.

I've been told by my ALS neurologist that this disease neither accelerates or decelerates. Take one day at a time, enjoy what you can still in life. The whale I look at it is that we all started dying the day we were born and we may be know from what. I strongly recommend you don't overdo it because you'll find you don't recover well. You lucky live in a warm climate. Hope you have a good ALS clinic. Welcome to the club nobody wants to be a member of.

 

[affected]

welcome azgirl, so sorry to you have this diagnosis and are joining us here, but this is the best place to be.

My PALS has said constantly - if I don't use it I will lose it. He has in fact over-used muscles and I've watched his progression accelerate over the following week. (jhindley I would disagree with that neurologist as I have seen definite acceleration in response to injury) When I say over-used I mean things like, not do a lot physically for a week or 2, then spend 5 hours using a brush cutter.

Also injuries don't heal like they used to, so falls can be a major factor that changes the situation - we have had falls that have ruptured tendons, broken bones, split head open, and multiple bruises ands swellings. I can assure you, this has only made matter worse for his condition.

So, I would encourage you to think about a good high fat diet, exercising gently, pool exercise is great, accepting help with anything difficult and spending as much of your time enjoying your loved ones as you can.

Nothing in this life is guaranteed, so being positive and grateful are powerful things to hold on to.

 

[TerryG]

Sorry for your diagnosis. Found this video on youtube which explains the neurodegenerative process. If its to much, you can skip to 30 minutes, as he goes into supplements which should be considered. You will find most here are taking what is recommended.



Terry

 

[zoohouse]

Welcome azgirl, and sorry you have to be here. There are a great bunch of people with a lot of very good advise. My husband is from TX and that is where he was diagnosed July/12. There was a swimming pool at his apartment, and I found that it was really good for him to walk back and forth, and stretch while he was in the water. At one point after sitting and laying around for almost 2 weeks waiting for a diagnosis, he was very weak, and unable to lift his leg to get into the bath tub/shower. After doing the walking in the pool, forward, backwards, and sideways each way, he started to be able to lift his leg easily. Unfortunately, here in Canada the rec pool is too cold for him, so he has not been able to continue. We had planned on putting in an endless pool, when we built our new house, but ran out of funds, and he has progressed too much to get in and out.
So keep on doing exercise in the pool, and keep a positive attitude.
Paulette

 

[azgirl]

My mental health has taken a real beating since getting this diagnosis (no surprise there). Before, I was so active each day...riding my bike, hiking, working in the yard, playing golf, etc. These were the ways for me to relieve the stress, and all things I truly loved. Now that outlet has been ripped away and I am really feeling not only the loss of those activities, but the loss of a stress outlet.

It seems like you all think the pool activities are a good thing. I've been told by my doctor that lifting light weights, as long as it is not done to exhaustion is a good thing, but some of you seem to disagree. I just don't want to do anything to make this situation worse than it already is.

Thanks for your concern and help.

 

[Santa joe]

I am so sorry you are having to deal with ALS. The mental stress is overwhelming. My husband and I deal with it everyday. Medication can help. The one think I find most important in this forum, it the fact that the PALS and CALS live with this disease on a daily basis. I find more suggestions and experiences on this site that are beneficial to us. Not to say the doctors aren't proficient in their field, but we here, are living with ALS.

 

[COSister]

We will stay positive. Lots of plane trips ... lots of family and friends to help us all.

 

[ardalon]

Stay positive! No one knows what the future will be. Maybe tomorow someone will find a treatment that helps us. Who knows?
Arda

 

[Bad Balance]

So sorry you have to join us.
When I realized that my anger stemmed from fear, it helped some. I try to go there and find my center.
We can hide the fear, but it is always a balled up knot in our core.
Try to find a regular pattern and something that you enjoy as a creative outlet.
Do for others...this gets you outside yourself