Status
Not open for further replies.

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
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
That's great, Adam! So glad you can boast nine years of ups and downs, and we hope you are having a plateau to last at least another nine. We are paying attention to your advice for Rick (my husband the PALS)

We know the protein helps and not believing in medications as a whole. Also moderate exercise is the key to not depleting strength. All best wishes to you and yours. M and R

How old are you? And have you learned about our friend Mike, user named Quadbliss? You can benefit hearing about him.
 

lynster

Distinguished member
Joined
Jun 12, 2008
Messages
128
Country
US
State
OR
City
Pacific Northwest
I am hoping for 10 years plus!

Just so you know...

My husband & I had our second clinic visit last week. It had been 4 months (the 3 month appt was cancelled due to weather), and we were worrying about his progression. We were pleasantly surprised when the tests show that although his strength is less, it is just in his hands and right leg. On the whole, everything looks good. His lung tests were great, but you *know* they did not do one with him on his back. (!) So, we are planning on looking at this as at least a decade cycle - not monthly or even daily!

Many thanks to all of you that write words of support. They help more than you can possibly imagine!

Lynn
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Thank you for the great advice and positive outlook, Adam. Here's to another 10 years! Cindy
 

Doris Little

Active member
Joined
Oct 21, 2008
Messages
48
Reason
PALS
Diagnosis
08/2008
Country
AU
State
Victoria
City
Melbourne
I have been going to the gym and water aerobics which is the best. I am amazed what you can do in water compared with what you can do on land. I really appreciated your thread as I was unsure if excercise helped. Also I was interested in the protein supplements. I am taking Ritulek - Did you ever try it? Also what sort of diet are you on. Are you hell bent on having Organic vegetables and food? Do you eat a lot of red meat? I would appreciate your imput. Regards Doris
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
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.

How can you be so sure they did not help at all? You have survived ALS for 10 years! Something helped. LOL

I am glad something is working for you or you have a slow version of ALS or PLS.
 

CRF8

Active member
Joined
Dec 3, 2008
Messages
70
Reason
Loved one DX
Diagnosis
11/2008
Country
US
State
FL
City
Orlando
vitamins

my wife takes creatine, b complex, b12 shots, vit E ,and a multi., +CoQ10
Dr says you can OD on some vitamins that dont leave system quickly- ones that sound like metals. Maybe they help with ALS, probably not, but they all help with cells etc. AND general health
Guestimate= $70 a month for the pills
CRF
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
loved your positive post

Hi Adam

Congrats on your positive attitude and all the great tips!

Was wondering.....since my husband is the one with ALS and he doesn't like wine..
do you think my having a glass a night would help? I love it and have a glass each night. Having one for you tonight Adam.

Keep up the good work!

Patty:p
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
1Adam12,

You just have to love that handle! Takes me back quite a ways! Loved your post and love your attitutde. You seem like a guy that would be great to bumb around with. Enjoy that great California sun!

Zaphoon
 

1Adam12

Member
Joined
Jan 22, 2009
Messages
19
Reason
PALS
Diagnosis
03/2000
Country
US
State
ca
City
fresno
Thank you for the feedback ! To answer some of the questions...I havehad als almost 25% of my life - only 38 :)

I don't mean don't take any supplement check out what's in Liquimax;

Amount Per Serving - % Daily Value: Calories 20, Total Carbohydrates 6g - 2%**, Sugars 6g, Vitamin A (as Vitamin A Palmitate) 2,500 I.U. - 50%, Vitamin C (as Ascorbic Acid) 500mg - 833%, Vitamin D (as Cholecalciferol) 400 I.U. - 100%, Vitamin E (as d-alpha Tocopheryl Acetate) 60 I.U. - 200%, Thiamin (as Thiamine Mononitrate) 3mg - 200%, Riboflavin 3.4mg - 200%, Niacin (as Niacinamide) 25mg - 125%, Vitamin B6 (as Pyridoxine Hydrochloride) 4mg - 200%, Folic Acid 400mcg - 100%, Vitamin B12 (as Cyanocobalamin) 12mcg - 200%, Pantothenic Acid (as d-Calcium Pantothenate) 20mg - 200%, Calcium (as Calcium Lactate/Gluconate) 20mg - 2%, Magnesium (as Magnesium Gluconate) 8mg - 2%, Zinc (as Zinc Gluconate) 1.5mg - 10%, Selenium (as Selenium Amino Acid Chelate) 7mcg - 10%, Copper (as Copper Gluconate) 0.2mg - 10%, Manganese (as Manganese Gluconate) 0.2mg - 10%, Chromium (as Chromium Polynicotinate) 12mcg - 10%, Sodium <5mg - <1%**, & Potassium (as Potassium Citrate) 70mg - 2%. Proprietary Herbal Complex 20mg - *** (Natural Polysaccharide Fiber, Green Tea Extract, Ginkgo Biloba Leaf, Red Raspberry Extract, Grape Seed Extract, Pau d’Arco Bark Extract, Suma [Pfaffia paniculata (Mart.) kuntze] Root, Nopal Cactus Fiber, Grape Skin Extract, Citrus Pectin, Myrrh, Bromelain, Royal Jelly, Herbal Cat’s Claw Powder Extract, Chuchuhuasi) Proprietary Healthy Aging Complex 10mg - *** (Lutein Esters Complex, Coenzyme Q10, Aloe Vera Concentrate [Aloe vera], Lycopene) Citrus Bioflavonoids 10mg - *** Proprietary Soy Amino Acid Complex 10mg - *** (Lysine, Glutamic Acid, Aspartic Acid, Taurine, Leucine, Arginine, Phenylalanine, Serine, Proline, Valine, Isoleucine, Glycine, Threonine, Tyrosine, Histidine, Methionine, Cysteine) Essential Fatty Acids (Omega 3, 6, 9) (Flaxseed Oil Powder) 3mg - *** Vanadium (as Vanadyl Sulfate) 500mcg - ***
**Percent Daily Values (DV) are based on a 2,000 calorie diet.
***Daily Value (DV) not established.

it makes me feel great at only 25$/mo

I have a peg and consume 1200-1300 cal/day. 2ensure in am 1jevity for lunch [plus wine & liquimax] 1 for dinner.

Thanks for the information on quadbliss his web site had great stuff.

Adam
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I Too Am On My Tenth Yr
All I Take Is Strovite Advance A Vit
I Think Just Some Als Is Slow

Pat
 

ptich

Distinguished member
Joined
Jan 12, 2007
Messages
171
Country
US
State
California
City
Mountain View
With my Upper Motor Neuron symptoms I always look as if I had a bit of wine :) So I doubt that getting more of it would help...

But Muscle Milk may be a good idea. Are you ordering it online, or it is available in the grocery stores ? Never heard of it before. How long you've been taking it ?

"Write down every expense for tax purposes" - this is something. Are medical expenses tax deductible ? I thought it is only if you have something like Flexible Spending Account (FSA) from your employer (I currently do, but supplements are not eligible for FSA).
 

CRF8

Active member
Joined
Dec 3, 2008
Messages
70
Reason
Loved one DX
Diagnosis
11/2008
Country
US
State
FL
City
Orlando
income tax

medical bills in excess of a % of income can be deducted, I think.
I have never hit the limit so I paid no attention to it, until now.
 

Doris Little

Active member
Joined
Oct 21, 2008
Messages
48
Reason
PALS
Diagnosis
08/2008
Country
AU
State
Victoria
City
Melbourne
Are any of you taking Rilutek?
 
Status
Not open for further replies.
Top