1Adam12
Member
- Joined
- Jan 22, 2009
- Messages
- 19
- Reason
- PALS
- Diagnosis
- 03/2000
- Country
- US
- State
- ca
- City
- fresno
My name is Adam and I was diagnosed at Kaiser with ALS in 2000, yes 9 years ago.
Re diagnosed by neurologist, re-re diagnosed at Forbes Norris in SF.
I started having foot drop, then legs arms etc. I currently have g-tube and wear bipap 24hrs.
I thought i'd write some hints and tips that have worked for me. This may or may not work for you.
Don't take prescription medications 'just because' - your regular dr. may think he's helping but doesn't know jack about ALS. I took a bunch until I was hospitalized due to sodium / potassium imbalance. The /only prescription I take is prozac.
95% of prescriptions are available in liquid form - ask!
Don't OD on vitamins,herb supplements, or magic elixirs - they don't work, don't be misled. I was spending $400/month didn't help.
If you're having trouble sleeping [apnea/hallucinate/no rem] see a sleep center right away this can cause serious problems. I was in the hospital 2x intubated until I used a bi-pap.
If you can't swallow or having problems get a g-tube. I was less than 100lbs and got sick because I waited too long.
Doesn't matter how old you are, get Social Security, Als patient gets medicare
If you can, do it. I went on 3 cruises after I was diagnosed - I still regret not going to Disneyland
Eat a lot of protein - I started using 'muscle milk' and sprouted muscles.
Things I think helped;
Red wine daily
Asta factor sport [10mg Astaxanthin]
Nasacort AQ
Liquimax
Muscle milk
Prozac
Cough-Assist - a must!
Weekly muscle massage
Excercise any way you can - even if you can't move
Want to use a pc?
Natural Point for mouse [$400 w/ auto click]
Click-n-type - virtual keyboard with prediction [Free, awesome program]
Notepad++ [free]
Write down every expense for tax purposes
Pray, family and positive attitude.
I run a couple web sites, enjoy horror movies, MMA, football , abeer every now and then. I'm gaining wieght and muscle and plan to breathe on my own by summer [150lbs] . 9 years to get this way I don't expect results overnight.
hope this helps someone.
there are good and bad days - enjoy all of them
for my safety a disclaimer
no warranty whatsoever is made that any of the articles are accurate. There is absolutely no assurance that any statement contained or cited in an article touching on medical matters is true, correct, precise, or up-to-date. The overwhelming majority of such articles are written, in part or in whole, by nonprofessionals. Even if a statement made about medicine is accurate, it may not apply to you or your symptoms.
Adam
Re diagnosed by neurologist, re-re diagnosed at Forbes Norris in SF.
I started having foot drop, then legs arms etc. I currently have g-tube and wear bipap 24hrs.
I thought i'd write some hints and tips that have worked for me. This may or may not work for you.
Don't take prescription medications 'just because' - your regular dr. may think he's helping but doesn't know jack about ALS. I took a bunch until I was hospitalized due to sodium / potassium imbalance. The /only prescription I take is prozac.
95% of prescriptions are available in liquid form - ask!
Don't OD on vitamins,herb supplements, or magic elixirs - they don't work, don't be misled. I was spending $400/month didn't help.
If you're having trouble sleeping [apnea/hallucinate/no rem] see a sleep center right away this can cause serious problems. I was in the hospital 2x intubated until I used a bi-pap.
If you can't swallow or having problems get a g-tube. I was less than 100lbs and got sick because I waited too long.
Doesn't matter how old you are, get Social Security, Als patient gets medicare
If you can, do it. I went on 3 cruises after I was diagnosed - I still regret not going to Disneyland
Eat a lot of protein - I started using 'muscle milk' and sprouted muscles.
Things I think helped;
Red wine daily
Asta factor sport [10mg Astaxanthin]
Nasacort AQ
Liquimax
Muscle milk
Prozac
Cough-Assist - a must!
Weekly muscle massage
Excercise any way you can - even if you can't move
Want to use a pc?
Natural Point for mouse [$400 w/ auto click]
Click-n-type - virtual keyboard with prediction [Free, awesome program]
Notepad++ [free]
Write down every expense for tax purposes
Pray, family and positive attitude.
I run a couple web sites, enjoy horror movies, MMA, football , abeer every now and then. I'm gaining wieght and muscle and plan to breathe on my own by summer [150lbs] . 9 years to get this way I don't expect results overnight.
hope this helps someone.
there are good and bad days - enjoy all of them
for my safety a disclaimer
no warranty whatsoever is made that any of the articles are accurate. There is absolutely no assurance that any statement contained or cited in an article touching on medical matters is true, correct, precise, or up-to-date. The overwhelming majority of such articles are written, in part or in whole, by nonprofessionals. Even if a statement made about medicine is accurate, it may not apply to you or your symptoms.
Adam