Working on 10yrs with ALS

[1Adam12]

My name is Adam and I was dx'd at Kaiser with ALS in 2000, yes 9 years ago.
Re dx'd by neurologist, re-re dx'd 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 dx'd - 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]

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]

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]

Thank you for the great advice and positive outlook, Adam. Here's to another 10 years!! Cindy

[Doris Little]

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]

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]

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]

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]

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]

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

[strikeout]

Patty,
I had to laugh! I say go for it!!:grin:

[patricia1]

I Too Am On My Tenth Yr
All I Take Is Strovite Advance A Vit
I Think Just Some Als Is Slow

Pat

[ptich]

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]

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]

Are any of you taking Rilutek?

[1Adam12]

I Too Am On My Tenth Yr
All I Take Is Strovite Advance A Vit
I Think Just Some Als Is Slow

Pat

Hi Pat I'd love to hear more about you.

[1Adam12]

I don't take rilutek...

I take ester-c though in powder form.

I get muscle milk [liquid form] at costco or sam's club it's a lot cheaper.

[Peg B]

Adam

Your note is great. So kind of you to share your experience. I will start drinking the muscle milk again. I haven't had it for awhile. However...

We get "Muscle Milk" (MM) on line. The largest container is $36.00 with $6.00 for shipping. My husband orders 2 containers at a time so that the shipping is split to $3.00 each. He used to drink it with just water. But now we add about 1/2 cup of plain yogurt, 8oz of skim milk, and a banana. We put it in the blender with 4 or 5 ice cubes and two scoops of the MM mix. It makes two large drinks and tastes great, like a malt. You can order different flavors but we like the chocolate MM. You can also add other fruit like berries. The yogurt gives it more protein. The ice give it malt consistency, if you want that.

Here is the site he orders it from. It is much more expensive in the stores like $30.00 for 1/2 the size. If we drink it everyday each container lasts us at least a month.

http://www.allstarhealth.com/f/cytosport-muscle_milk_light.htm#productlist

Hope this helps. Best Wishes, Peg

[Connie]

Hi Adam and James,

You are both so inspirational. Attitude is everything, isn't it. We just have to be positive and try to focus on what is good and be hopeful because this disease is so overwhelming.

Thank you.

Connie

[Connie]

My husband, Gordie, is taking Rilutek and hopes it helps. He hasn't had any side effects or problems.

[tgif]

My husband was diagnosed when our twins were 4 months old; that was 3 months ago. I am amazed by his positive attitude! We also believe that there will be a cure soon; he wants to stick around to see them grow up!!

[Valya]

1Adam12, thank you for your informative posting. My 18 year old son was just DX with ALS. He's currently on a daily dose of 200mg Rilutek, 1000mg Amoxicillin, plus the supplements Vit E and CoQ10. Agreed the supplements may not be slowing the progression but it won't hurt and should help his general health, althought it does add two more daily pills, which he's unhappy about. He's eligible to participate in a trial on Talampanel at Forbes Norris, although we haven't decided yet.

I love your attitude and your down to earth, practical tips. Thank you for sharing. Here's to a slow progression.....

Valya

[lovelovelove]

to 1Adam12,
i like to thank you for the tips you share here.
you help me a lot!
i just heard that my mother has PBP today , just after i became a mother at age of 43.
i was so frustrated that i could not sleep the other two days.

but after yr post, i feel confident now.
i will tell my mother to stay on a good attitude, just go travel ,just hv fun.
just hv good sleep....

and i will tell my mother to eat good, keep a good weight.

at moment, i my mother is eating baby food, and baby milk , which is my idea.
my mother is living in china, there is no muscle-milk , but we will find sth substantive.

i am in Holland , i hv just send 2package of Rilutek to her, hope that will help.

keep in tought everybody!

Let fight together ! we will win !!


linda :lol:

[Big Mike]

Thanks Adam and the rest of you for all of the helpful advice. I can't tell you how much it means to me to listen to such hopeful stories.

I was recently dx with Als and am awaiting my second dx from an ALS specialist in Portland, Oregon--Dr. Kim Goslin.

My first sign of weakness came last spring from a partial left foot drop, which is has gradually progressed to more difficulty walking on that leg. However, I have UMN symptoms going back at least a couple of years. I also have a lot of muscle twitching.

I too believe that some very good therapies will arrive in the near future in the form of stem cells developed by Neuralstem, Inc., as well as viral gene therapies that are being co-developed in a partnership between ALS TDI and the bio-pharamceutical company, Askeliopos, which was announced recently. I'm sure other therapies are also being developed at this time as well.

[bluebottle]

I have been taking it for three months now and think my progress has levelled out a bit and no side effects as yet

[sharileeus]

Hi Adam, my brother in law was diagnoised 2/09 and is having a hard time with this. My question to you is i saw you drink wine daily? My brother in law is a die hard beer drinker, never eats just drinks. How can his brain send any messages to his body if he drinks like this and how long can he last? Iam not asking you as a dr. but do you drink alot each day ? I need to help him and my sister because its too overwhelming for them thank you sharileeus . brother in law 2009

[CindyM]

Hi sharileeus. Sorry to hear about your brother in law. Drinking all day and not eating might be his way of self-medicating his sorrows. Certainly can't blame him for feeling down right now.

If this is new behavior, let's hope it changes when he adjusts to the news. If not, you might want to contact your local Al-Anon organization. They will have a wealth of information about how to help your sister and her family. Good luck and keep in touch. It will be interesting to see how this works out. Cindy

[sharileeus]

Thanks Cindy, I believe that if he would lighten up on the beer he would be able to eat better and maybe exercise alittle more. I know how he feels but he has been drinking for the past 16 years like this. I know its hard but two rehabs latter iam sober since1998. I also was in hospital last feb. 2008 and told i would not see another month and here i am gardening all summer, moving rock and doing alot. I know als is bad but does lifestyle changes make a difference at all? Some of his weakness could come from alcohol maybe because i remember how i felt when i drank. I not saying he should stop all together but does anyone feel he should give it a chance after the shock wears off. Or does the drinking really not do anything? thanks again iam just grasping at anything i can to help them and i feel so helpless that i wish i could give her some kind of answers because thats what big sisters do. Sorry for the rambling sharileeus

[BethU]

Sharilee, first congratulations on 10 years sober. That is a great achievement.

I have never heard of any discussions about excess alcohol consumption affecting ALS one way or another. One of the most important things he needs to do is keep his weight up. If the beer interferes with his eating, as you say it does, or if he's losing weight, you need to try to figure out how to get better nutrition into him.

Also, his drinking is going to affect his quality of life and health as ALS progresses. If he loses weight, strength and muscle, he will have balance problems, and a load of beer in his belly is not going to help. I'm sure it will make caregiving much more difficult.

But if he's been drinking like this for 16 years, you and I both know he's probably not going to stop when he's hit with a whammy like ALS. (My sobriety date is 1979) Unless he has a transforming experience. Do you think he is capable of cutting back? If so, I'd say DEFINITELY it would help him to get good nutrition and protein into his system. As ALS progresses, he will have less and less control over his intake ... and he may require a feeding tube, which would allow your sil to get some good nutrients in him, too.

If there's any way you could convince him to cut back and replace at least some of the beer calories with more healthful stuff, that will help his overall health and give him a better fighting chance with ALS. And the sooner he cuts back, the better. But, if the beer helps him cope right now, I'd say, just try to get him to taper off so he can take in more healthful foods. Don't take away his crutch completely.

IMO, going cold turkey on booze would be the wrong battle for him to be fighting right now. He's got enough on his plate with ALS. This will be a difficult task for you, but I do suggest trying to help him cut back.

Cindy's advice is excellent ... Alanon would be of enormous help to you and your sil, but frankly I think ALS trumps everything right now. It's up to him if he is willing to fight ALS.

[sharileeus]

thank you Bethu, it was hard but......... Anyway thats good advice. I agree, he cannot go cold turkey because the withdraws might kill him. I am going to use myself as a example when we have a family meeting. He saw the doctor the day after superbowl and i do not know how much they tell her but it seems to me he might of faired better in the strength test if he wasn't hung over. I know how he feels about the news because i was diagnoised with ph in 2008. The outlook for that is also bad but, after losing 60lbs of waterweight on lasix and doing exactly what my doctors says iam doing really well and no ph meds at this time. I know als is different but i feel if i can do what they tell me i might be around longer than they think. The doctors in Feb. 2008 I would not last a month. Well......... maybe if he can get better nutrition in him and exercise after the shock wears off he can live like some on this board. Again thanks sharilee p. s. I will take it slow with him and give him the respect he deserves

[Brenda Bowman]

I am so glad to hear good news! My son died April 2,2007 . I visit and want to talk or do something .You have made me happy. Hope things keep getting better for you! Love, Brenda