trusting

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JeffP

Distinguished member
Joined
Jan 8, 2010
Messages
295
Reason
PALS
Diagnosis
08/2009
Country
US
State
MI
City
Iron Mountain
a subject i would love to here your replys about. i put full trust in the lord ,but god also gave us a brain to use .you all always hear me talking about me and my research on als.i dont really hear much from others about this do you just rely on your doctors advice or the fda or what are some things you may have found useful in als .thanks my fellow members
 
I've researched to the point that my husband's doctors have never heard of what I am talking about! Some of the research being done makes sense, some not. Lately, I have been reading about RNA. Seems like there needs to be more research in this area. As for some of the conventional "treatments", I like to see some of the stretching techniques for MDA applied to ALS patients. I realize that certain modifications would have to be made - especially in the area of the shoulders, but it seems that these two diseases have alot of similarities, so it should be helpful. Anyway, we are trying it.

Like you, I trust in the Lord with all of my heart. I don't waste my time trying to figure out why this happened, but I do try to use the mind that the Lord gave me to make this journey a bit easier for my husband.
 
I spent literally thousands of hours researching and can now understand why the doctors don't have a cure yet. I don't waste anymore time with it, I concerntrate on enjoying each day. God is in control and has given me peace to not worry about finding a cure, I leave that in the researchers hands.
 
I'm with Joel! I drove myself crazy in the beginning, trying to read & understand the research. In the end, the more I read, the more confused I was.

Now I leave the science to the scientists; I trust our doctors & know they are doing the very best for us. You just have to take that leap of faith!

You'd be surprised how calm you can become when you let go and, as Joel says, enjoy each day!
 
A big amen to what Joel said.
 
Dear Jeff, I'm right there with Joel also. I've got three neuro textbooks as well as the internet, have already tried supplements (years and years)... there are an awful lot of things the researchers and doctors don't yet understand. Peace is only in the Lord. (and I don't understand what I've read in those text books, by the way.) The goal for me is to do what I can to avoid frozen joints, bedsores, etc. and keep pain to a minimum... and love my friends and family. Oh, and to be easy to care for, as in cheerful. These are not 'giving up' but rather fighting to reach the end without leaving unnecessary pain behind me.
Love you--Ann
 
I'll third what Joel said. I don't have the energy for the research or the background knowledge to make sense of what I would find anyway so I don't waste my time. I know that there are a lot of very intelligent and trained people doing research for me so I spend my time trying to live the life I have left.

I'm here for a good time, not a long time!
 
Right on Joel! God is the cure! By miracle, or medicine.
 
I agree with Joel - for my PALS. He knows that I am looking things up, researching, keeping up to date. This leaves him free to sieze the day! (or relax watching a golf match!) Long before the diagnosis, we realized that we had to put our trust in the Lord.
 
I don't research much. I read a few articles on it, get info from here and that is about it. I do not have a scientific kind of mind for research. Instead of going into such research, I started reading books on afterlife. I guess how we deal with things show the kind of mind we have.

ghii
 
Jeff -

I don't do much if any research on the computer anymore. I did when my mom was first diagnosed but not anymore. The internet is full of much information, some true and some not. I go to the support group each month where new things are discussed, I read posts on the forum, and I talk to people.

Take care and have a blessed day.
 
you know i have full faith in the lord and i feel at peace .but without some knowledge like devices barry and joel came out with it wouldnt of been done.i praise god and believe in miracles and healing .its almost like reading the bible to come closer and to know about are lord .that is how i veiw it if i let everybody else do the work for me what have i learned.you also have to remember doctors and researchers are people just like us .they have made many poor decisions on diagnosing problems .it has caused many to die .thats why i do what i do its like fighting the enemy satan you better hav4e some knowledge of his tricks or you will be led astray from christ .i believe in an open mind
 
Jeff I still look for information from a variety of sources. I try to keep up with the latest research and theories about the disease. Recently I ran across a study of electro-acupuncture in als mice(!). They found signs that it reduced harmful over-activation in the nerves. I've never had acupuncture but I think I will try it out, see if I notice any benefits.

Electroacupuncture reduces neuroinflammatory respo... [J Neuroimmunol. 2010] - PubMed result
 
Very, very interesting Hal! I think it is certainly worth a shot! I believe in the "do no harm" theory. If it cannot harm you, why not try it if it isn't cost prohibitive.
 
Hal, let us know how it goes for you. BOTH my dads VA ALS specialist, and his ALS specialist up in Seattle both said that acupuncture is not worth it for ALS patients, it wont work. My dad has been doing it anyway, and has yet to notice a difference. Just an FYI. And Jeff, in answer to your questions on faith etc...It is my personal belief that God has provided people with brains for a reason. There are doctors out there for a reason. We cannot rely on the doctors alone with any disease, not just ALS. We have to watch our own backs too, and see if there is anything out there that can help. My dad along the way, has found many things that has helped slow his progression. Things we would not have found, had we not done a ton of research. Everyone progresses differently, but I personally think that there are things you can try to see if it helps you. You have to be leary of scams. But try and use common sense. God gave us that too!
Hugs, Kari
 
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