"how to" slow down the disease

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nightwolf_mk

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Hello people. I was thinking... For those who have slow progression, what was the actions that you have made and you think that helped to "slow down" the disease. Change the diet? Maintain positive attitude?
I was wondering maybe if all make a list of these things we could find things in common, like a survey... and maybe these "things in common" could slow down the course of disease in other people.
Sorry (again) for my poor english, I'm still learning the language :lol:
God stay with you.
 

BethU

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Hi, Nightwolf ... your English is great! You sound like a native speaker.

I think the speed of progression depends ultimately on factors outside our control right now ... I think there may be different "types" of ALS, just as there are different types of cancer, some fast progressing, some slow. But so far, my progression has been fairly slow, and these are the things I've done since my diagnosed. (But it was even slower before my diagnosed ...)

First: I gained weight. I'd lost 24 pounds in two years, and my neuro told me that regaining weight, or just not losing it in the first place, slows down the progression even more than Rilutek. So I gained back 10 pounds, and I am trying to maintain at a specific weight. Alas, I lost 3 pounds this week, so have added calories and hopefully will gain them back quickly.

Second: I discontinued statins (but that has only been recently). It's established that statins do not cause ALS, but it's also been established that statins make the symptoms worse.

Third: Since discontinuing statins a couple months ago, my "bad" cholesterol has gone up from 160 to 266 ... and it's my hunch that a higher cholesterol reading is healthier in ALS patients. I don't have any proof, but I've heard that mentioned on various forums. I also have heart disease, so we'll see which gets me faster ... ALS or my heart! :)

Fourth: I try to get a lot of protein every day. I use "muscle builder" protein supplements in my shakes. I have NO IDEA if that helps or not, but I figure it can't hurt me.

Fifth: On the advice of my insurance case manager, I have just recently upped my intake of Q-10 from about 30 mg a day to 400 mg, and I feel it's beneficial, but can't explain in what way ... just that I think I'm a little stronger.

I tried Rilutek, but it made my symptoms worse, so I discontinued it after a month.

But as I said, progression was slow for my first two years of symptoms, and these changes have all been in the last six months.
 
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Marjorie R. Wilcox

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slow progression

Rick has slow progression with his ALS. He has had respiratory problems in his sleep for years... maybe 12. He has been walking "funny" for that many years too. For the most recent few years, he has been short of breath and has not been able to do anything much without perspiring profusely. About a year and a half ago he began to stagger noticeably and began to show problems with negotiating his walk. A few more little things were added so that we decided to bring them up with his neurologist and pulmonary specialist. He was diagnosed 14 months ago. The only new symptoms he has is increased morning congestions, and one stiff finger. All that to give you this:

He is on a special diet of no white flour, high protein, no pasta, low salt, and no artificial sweeteners. He takes no supplements or medication of any kind. He is 61, and USED to have high blood pressure and high cholesterol. His type II diabetes is totally under control without insulin or pills too. He also healed a HUGE injury to his leg that occured a year and a half ago, where he had to have six surgeries with bone grafts. This diet is super-duper healthy and we both believe it affects his ALS progression positively.

He is 6"1" tall and 260 pounds. He doesn't exercise heavily, but does carry in wood, groceries, shovels snow slowly and carefully, and walks casually all day. He takes a nap in the afternoons and has a Bipap for sleeping. He doesn't want to try any meds...... at least not yet. He does have leg spasms sometimes and takes only Tylenol. So far, a little time or a little massage from me, will make his legs stop spasming.

Who can say why his progression is slow, when others are fast? I do believe his diaphragm is growing weaker, and his night breathing scares me sometimes. .... but we count our blessings and make the most of life as ALS allows. Rick recently became treasurer of the local Elk Lodge, and is as happy as a clam doing that. He has a very calm, positive attitude. He says if he dies of this, the bells will ring, the angels will sing, and he will go to a better place! He is a gentle man with a great attitude and I treasure him. I hope that a good woman keeps him well! Me!

This has been long, but I hope it helps someone out there!
 

hopingforcure

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Wow lovely ladies, these 2 post's before mine show the goodness in the disease. A kind loving PALS and CALS. I will say that the 2 of you ladies did a wonderful wonderful service of answers and suggestions, having read so much about ALS, I think the advice you gave was priceless and extremely helpful. I had pictures in my mind of Rick, and I just love him already. I have read so many helpful post's from Majorie and Beth alike, and I am honored to be in the company of such a compassionate caring group.
I agree with all the advice you gave, and believe they will eventually find out that ALS came in all shapes and sizes, and sometimes was brought on by events, genetics, a number of different things that create somewhat of a Perfect Storm so to speak. I am always hoping they find out what slow progressers, have that makes the disease a little slower, and with that find out way's to slow it for all.
I rhink it is the most encouraging time in ALS history for postive things in the future..
 

Mr. Bill

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NightWolf,

My Father passed away 13 months after he was diagnosed. I always heard that familial ALS follow pretty much the same time line from Father to Son.l

I was first diagnosed in 2004 with ALS, another Neuro diagnosed me with PLS in 2005 and the same neuro recently changed my diagnosis to UMN Dominant ALS. So, as you can see, ALS/PLS is not a precise science.

In the last four years, if I've learned one thing is, that worrying doesn't affect the progress of the disease. Things will progress as the Lord wills it. My best advice is don't worry about everything and concentrate on living life to it's fullest. I spent a lot of time in the last four years worrying.....I would have better spent my time enjoying what I have here and now.

Bill
 

ptich

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BethU, I also heard from a former colleague (who has similar symptoms to mine since 2000, on BiPAP nightly, but still "undiagnosed") that bad cholesterol is good thing for PALS as it protects motor neurons. Boy, when on the Earth these scientists will eventually figure out what is really good or bad... :)

But I never heard that gaining weight is a proven good thing for ALS... I thought that "gaining weight" pertains to the late stages of ALS wnen a PALS cannot swallow and does not have PEG, so he/she is losing weight quickly. Could you please elaborate more on what your neuro told you about the weight ? How much is good ?

As I am spending now more time in the bed and moving a lot less than before, I am gaining weight, and now I am 25 pounds above the target weight for my height. I was thinking of starting to work on losing weight, but after your post I am not so sure any more.
 

ptich

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One thing that I would definitely add is to avoid the stress. Over last 2 years, I had 4 pretty well defined instances when my symptoms have deteriorated and then only partially regressed, with 3 of them happening after psychological stresses and 1 - after a cold (or a cold-like disease).
 

BethU

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I tried to add this to my post, but my editing time had expired, so will do a new message.

I mentioned in my post that I had stopped taking statins. This was after checking with my cardiologist. Please don't anybody stop or start prescribed medications without consulting with your doctors!

Also, to clarify the Q10. That was not instruction from a neurologist, but a suggestion from my insurance case manager, who is a nurse.

Pitch: I tried to pin the neuro down on that exact question: Should I keep gaining indefinitely, or just maintain? I never got a clear answer, so I picked a weight that felt comfortable and healthy, and am trying to maintain. I'd suggest that you talk to your neuro about it before trying to diet OR gain.
 

gbrown

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Progression

I agree with everybody that all PALS have different progression rates. My symptoms started in August of 2001 with balance problems. I was first diagnosed'ed with diabetic neuropathy until finally being diagnosed'ed with ALS in July 2005. I worked until August 2007 when my speech got to where I was hard to understand. I can still talk some but I have an ECO communication device when I need it. I use a power chair but can still walk a little in the house with the aid of a walker. My fingers curl some and I use Oval 8's at night to keep them straight. My loving wife and caregiver helps me do things like showering, dressing, etc.

I do range of motion excercises (arms and legs) every day. I do stretches every day. I do half knee bends every day. I do lung and diaphram evercises every day. I do mouth and tongue excercises every day. When I'm just sitting and watching T.V. I'm still doing some kind of excercises. I don't know if all this helps or not but it makes me feel better than just doing nothing. I try not to get stressed over anything and I try to keep a positive attitude. I pray a lot and I don't believe I going to die from this disease, but nobody knows for sure what is going to happen.
Gordon
 

olly

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i agree with bethu and others on the advice given.
i have had this 9yrs now/limb onset,the first two were progressive then for a few years that slowed right down,i have not a clue why.
the last 2yrs since bulbar symptoms started things have gone down hill again.
i have always been a healthy eater but now try to eat more fattening foods like puddings.
my weight has plummited this year and i am very thin,its hard to try to maintain weight and i think this has sped up my progression this past year,i am definatly getting weaker.
my breathing also has been slowly declining over the past few years,at first it was just on a night in bed but now during the day.
as gbrown said stretching/motion exercises are good to do if you can,it keeps the muscles functioning as long as possible.
 

BethU

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Hi, gbrown ... you mentioned that your first symptoms were balance problems, and this is something I've been wondering about. Maybe you or others can clarify this.

Nightwolf, excuse my detour from your topic.

I know my left leg is weakening, as I've learned not to try to put my weight on it when trying to get up from the floor, or I'll go down like a ton of bricks. And I favor it when I walk. In the mornings, I limp ... so I expect at some point to start having falls as it weakens further.

But meanwhile, my balance is AWFUL ! I teeter all day long, sideways, forwards and backwards. I've never heard a PALS talk about balance issues, so I've been assuming that if a PALS falls, it's from leg muscle weakness.

Is balance an issue too, or is it just me?
 

Al

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I've heard others complain of balance problems but can't recall who it was. Maybe I'm getting demented. Lee told me the other day that I was.

AL.
 

olly

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hi bethu

balance problems are related to umn symptoms,i suspect that is why those with pls or umn dominant als have more problems with this.
the wobbling about sounds like balance issues,so would needing to hold on to something when walking,holding onto walls is common.
 

ptich

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I am having balance problems, but they come and go (as all UMN symptoms do in the early stages). Usually I am losing balance for a few seconds.
If I remember correctly, "brainhell" in his blog on blogspot.com described his walking problems, which eventually brought him to a wheelchair, as balance related.
 

Jennifer51

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Bethu...when I went for a second opinion, with a semi retired neuro, who is considered to be about the top man in his field in the uk..(he isknown worldwide) one of the tests he did was to check my balance, which was fine THEN..I am now having balance problems, not all the time, but I have to be aware of it...I am having a shower chair fitted, as when I wash my hair, eyes closed, who knows where I will go, due to balance.

Gbrown...would be interested to hear some of your exercises, especially with the mouth and tongue...I have leg exercises to strengthen legs, but the speech lady would not give me speech, tongue exercises...Also what breathing exercises do you do...I read on the forum about breath stacking, which I try to do...and the speech therapist gave me some breathing exercises...but only ..take a deep breath and see how far you can get with each of these sentences...if you could PM me, or I can leave my email address
 
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