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jerseygirl

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Jul 15, 2012
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Loved one DX
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Toms River
Hi Everyone,

I am new here, this is my first actual post as my father was just giving the diagnosis we dreaded..... he has PMA and the doctor said it will eventually become ALS, right now he is only having symptons of the Lower motor neurons center. He had tons of tests, scans and they have been working on trying to the bottem of his symptons since Janurary. My Dad has OCD and is very set in his ways, always taking tons of medications and vitamins.

I have been exploring your posts and trying to educate myself on what he can do to keep the progression slow if possible. I love that you do try to keep such a positive feel on the forum, thanks for that it helps make it a bit easier.

My question is do any of you have any suggestions, he has been obsessed for years about his cholestrol, also taking tons of meds and statins, I have asked him to please give them up... I see many of you say you did or it was recommended, can you tell me if he should try to eliminate some of the drugs he takes: statins, ashma meds, fish oil and more...... any suggestions are greatly appreciated.

Hoping to do what we can to keep things processing slow as possible.

Thanks
 
Hi Jerseygirl,

I am sorry for your father's diagnosis. You have come to a great place for support. My recommendation would be to have his doctor evaluate his meds to see if he needs all of them and to make sure there is none that is contraindicated with the other meds he is on. Alot of PALS and PLS'ers take vitamin suppliments. Other people will probably tell you what they are taking. I should take more but only taking vit. B at the moment. He is lucky to have a caring daughter! I hope this helps a little bit.
 
My post will be along shortly....went to moderator.
 
Welcome :)
Poppy
 
There's some indications that PALS with high cholesteral actually live longer than those that don't... don't know if there's an actual study or not. I would highly recommend getting off the statins, they made me immediately weaker when I started taking them prior to my diagnosis.

Do some research on this forum and others, but I can tell you the ones I chose to take: Creatine (5g daily, be sure to get a brand that contains Creapure® so you know what you're actually getting); higher doses of vit D3, and tapered off to 1,000mg daily; and Ubiquinal Co-Q-10, which you should always take if you're taking a statin to begin with. I've tried a variety of other supplements, but these are the ones I stick with. I'm also in a clinical trial (Dexpramipexole), which he should look into, they MAY be doing another phase 3 with higher doses. There is also talk of the Israeli stem cell clinical trial being conducted in the U.S., I'm looking forward to getting into that if I can. Good luck, plan for the future, get your equipment before you need it, and live for today!
 
Darn, just got moderated too...
 
Welcome to the forum, jerseygirl. Sorry about your father.

Here is a very good arti cle regarding di et in ALS. I'm surprised that your father's neuro did not automatically advise him to stop taking the sta tins. I believe the M D A also has printed an arti cle re di et, stating the same.

https://www.aan.com/elibrary/neurol...ovid.com:/bib/ovftdb/00132985-200804170-00001

You will need to convey to your father that a pALS (a person with ALS) has a much higher metab o lism than others. Thus, at rest they are burning ca lories and losing we ight. The more we ight the better.

There are supple men tal nu tri tion drinks to add we ight. Aslo, look into a pro duct called Bene calorie (one word). It can be added to anything for concentrat ed cals.

I wouldn't have him stop the asth ma med.

(sorry about the spaces in the middle of words...some trigger the mod fea ture)
 
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Hi JerseyGirl,

Welcome to the forum and sorry about your dad's di ag no sis! :( We're here for you!

CJ is absolutely right about the meds situation. My neuro agrees with some studies that have found having high cho lest erol is neur opro tec tive and helps slow down ALS. It is very important to stay on the as th ma meds and start seeing a pul mon olo gist. I have as th ma too, and I had thought it was well controlled, but apparently not. You have to stay on top of it so that the neuro and pulmo will be able to tell if breathing probs are the as th ma or ALS.
 
my pcp had me switch from flax seed oil to fish oil b/c of the positive effects. also started b-12 and i can tell a difference in my energy when i take it. you might ask your dr before stopping the fish oil.
 
Thanks everyone for your support and info.

Bless you all!
 
HI

He's definitely not going to want to stop any meds without consulting his doctor--but I'd almost certainly think that the asthma meds would be continued, as those of us with asthma are at a higher risk for pneumonia.

Keeping his lungs clear is difficult enough with asthma--impossible nearly without some meds to control it. I've heard that statins aren't so great with ALS--but can't answer that one at all.
 
My health was great before going on s tatins, but five months into s tatin use I started severe fasiculations and heavy,heavy night sweats, along with severe cramps. After abandoning the s tatin intake and six months of visits to my internist I was referred to a neurologist and diagnosed with ALS. - - Wish I had never never taken s tatins ! ! !
 
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