From first signs of ALS to wheelchair

[jethro]

it is hardly to remind of first signs of ALS for most of us. doctor said that one patient stil driving car and walk even he treats als from 2009. i remember first strange things that started to happen in 03/2015. dizzy, unstable walk, even i was everyday in gym 2-3/heavy weight cause i didnt connect als with weight lifting what will make progress faster. now i walk without wheelchair and anything, but can not walk more than 1000 ft. i guess that i will need a wheelchair arround new year.
searching for diagnose 2,5 years.
what's your experience - first signs of als to wheelchair?

 

[KimT]

Everyone is different. There is no "normal" progression when it comes to ALS. Some PALS die within a year of onset and others last for many years. I read a book by a pastor who had ALS and he worked five years after he was diagnosed, then another 10 after that.

 

[jethro]

ok kim, i wanted to say that i didnt know that i have als for almost 2,5 years. by chance, i found it after visiting neurologist who is expert in als, even i live in a small country. he also said that one man, 60, visited him for a 18 years and he died of other things. he knows few men that actualy didnt have idea what actually is als (small country, people from village, poor people, uneducated etc). hence, there must be connection with progress of als and the way you live/accept it etc. it looks that as less you know about als, you live more quality. i strongly believe in relation stamina-inner strenghth-als progress.
i walk without any helping tools, trying to live exact life before i found out that i have als. i hardly walk, but aim is 6000 steps/day. stil strong enough. even conscious that i have als, something in me doesnt want to admit it. until my legs betrade me and i fall.... i ordered copper socs and maybe it helps 1%. bandage for knees are also helpful. i felt twice on the flor, god saved my knees and ligaments (motus melior).

 

[KimT]

I can only offer my own opinion from talking with other people with ALS, reading medical journals, and doing my own investigation.

I think a person's mind is a very powerful tool but I'm also a realist. First, I think it's impossible to know how long you've had ALS. I think you can know when you experienced the first symptom or had the first failure but you might have had it for a long time before it manifested to that point. I also think that progression is very individualized and can't be predicted by anything else. Does the will to live and survive help? I don't know. Does denial help? I don't know. It took me a long time to believe I really had it. I was convinced I had some sort of mimic but I knew my strength was decreasing in certain areas.

If you have ALS, your life will have to change. Maybe and hopefully, not quickly, but the nature of ALS is that it is a progressive disease for which there is no cure. Lots of people think it's many diseases/conditions all rolled into one but the thing that stands out is our motor nerves die and, when that happens, the muscles no longer work. It doesn't matter how much muscle you have if the nerves can't give them a signal to contract....they just won't work.

Please take care not to fall. One thing we know is that falls can speed progression. I did something very stupid 14 months ago and that was running out of a grocery store loaded with bags. I didn't see the curb and twisted the ankle on my good leg. It was a severe sprain and I found out later I had torn some ligaments/tendons. It really set me back because I couldn't walk and that made the strong muscles I had in that leg get weaker. It also threw out my back and made those muscles even weaker. So try not to do things that will cause you to fall.

I have a hard time on uneven surfaces so I walk on a treadmill. Only 1/2 mile each morning. I go in the pool when it's hot enough to be relaxing and therapeutic.

Prior to ALS I could run 10 miles, hike, bike, and do many things other women my age wouldn't even consider. It's hard to face the change in my body so I try to focus and enjoy the things I can still do and leave the rest up to God.

It took them a year to diagnose me. The EMG showed it but my strength threw them off.

I hope your progression continues to be slow.

 

[grounded]

I was diagnosed 12/2011 & still work & can walk short distances with a cane (carbon fiber AFOs on both feet) - my arms are still strong enough to help with balance. When home, I just use a cheap AFO to help with right foot drop.
We are all different. Spring 2011 is when problems with left foot drop & hand asymmetry prompted me to see my family doctor. About 2 years before that, I had blood work results that showed muscle breakdown signs. Also noticed unusual fatigue when doing heavy work.
If I needed to walk very far, I'd need a wheelchair now.

 

[jethro]

@grounded
it sounds that your supplements/therapy doing a good job. you obviously have a strenghth. what do you use of proteins? kreatine monohidrate? l-serine? do you use carbohydrates? how long are "short distances"? and how long can you walk without taking a rest?
what do you think by "blood work results showed muscle breakdown signs"? do you mean emng?
appreciate

 

[Lkaibel]

Jethro it is unknown if any of those things have much of anything to do with ALS progression. My advice would be eat well, maintain your weight as long as possible and as is the chant here, avoid falls.

My husband has maintained his weight and eats well. He has no respiratory or bulbar involvement, walks with a walker, and even can walk a few steps 17 months after diagnosis and 21 months after first symptoms. He has use off all limbs, but all have lost some strength.

Is his slower progression related to the diet or not? No one actually knows. Best wishes with your choices for self care.

 

[grounded]

Jethro
I eat everything & anything, & kept weight (fat) even though losing muscle. I've also tried to keep as active as possible without overdoing it. I've tried many supplements over the years & can't say if any really helped or not. But it never hurts to try some of these. If you do a search on "supplements", you'll find many discussed.

When I was diagnosed at an ALS center, the doc said keeping a positive attitude was important. I think he really meant not giving up.