Many Questions

[JAMEYER]

Thanks for the info on that book - I must admit I was more interested in the scope of ideas rather than the specific details. I have just finished reading an inspiration book called Love Has No Limits written by Tania Hayes (Aussie), her fiance had a massive brain tumor in his 20's just before they got married. Not MND related but Inspirational because he went through more than 20 operations and not too many people thought he would survive. I have been working in television media - community services for over 30 years and have seen many, many miracles. SHARE THE CARE TOGETHER WE WILL FIND THE STRENGTH.

 

[mybrother]

My brother was again diagnosed in Iowa City. There was no doubt in their diagnosis. He had no testing none. They suggested psychologicical counseling for the family. He is taking it Rilicuk and Lithium. He did loose his job. He has no income. We are setting up fund raiser's for him. His right side is starting with fasuculations. He has AFO braces for his legs , but does not no were to find socks to go up to his knees?

Thank You All,
Mary

 

[fiddleplayer51]

Mary,
I am so sorry for this news. When you say "psycological counseling for the family", do you mean your whole family or does he have a family?
What a shame to get this diagnosis on his birthday.
I will keep you all close in my heart and thoughts in these next days and weeks.
Keep us posted about your situation.
I wish you courage and strength for the time ahead.
Jane

 

[mybrother]

Dear Jane,
The Doctor's in Iowa City feels the whole family needs counseling for what is going to happen. My brother Rick has a wife and one daughter. Both are in severe depression and possibly in denial. Our family is all in the same area. I have a sister and another brother. We just lost our father 2 years ago to a stroke. My mother is " sick". We are doing the best we can do help my brother. I appreciate all the help and comforting words I get from this Web Site. Keep In Touch!

 

[Al]

Hi Mary. Sorry about your brother. I don't know if you can get them down there but I wear Executive Length socks made by MacGregor's. It's a Toronto company but may sell to some of the better stores there. They come up to the knee and are made of different fabrics and lengths.
AL.

 

[mybrother]

help

Are their any treatments out there that are expiremential that could give my brother A FIGHTING CHANCE? He is on Rilueck and Lithium it's not helping. Does anyone know of anything else that could help? He was diagnosed in June and at that time he was walking. It seems this is going very fast for him. His legs shake like he has PARKINSONS DISEASE. i know you are all suffering out there. I can't understand why there is no meaningfull research or medical studys going on. This disease has been going on since the 1930's. Where is the research? I can't believe after all these years someone has not been able to to figure out this. We need to speak out! There is no reason after all these years that someone can't find a cure for this disease.


A sister who can't give up.
Mary

 

[CindyM]

Hi Mary- you raise the same questions we all think about a lot around here. So much money is spent searching for cures for diseases that affect millions and we still have not found cures for them. It is discouraging to think that ALS, affecting relatively few of the world-wide population, is lower down on the list for research funds.

You are right! We need more awareness!

 

[brooksea]

Mary,

look into Iplex and the struggle to get it!

https://www.alsforums.com/forum/showthread.php?t=5074&highlight=iplex

 

[BethU]

There is some awareness out there.

During the presidential debate last night, when asked about stem cell research, Obama mentioned that research is needed to "help find a cure for diseases like Lou Gehrig's Disease!" He mentioned another disease specifically, too, but I have forgotten which one, cause I was too busy cheering the mention of ALS.

BethU

 

[Zaphoon]

Don't Go To The Neuro Alone

The first neurologist I saw practically scolded me for not bringing a family member with me. If she would have had a diagnosis for me that day, I doubt she would have given it to me, being alone. She referred me to an ALS clinic for a second opinion and they did redo the NCV and EMG that day. I brought my wife with me on that appt (it was a 3 hr drive and my legs wouldn't have held up anyway).

For those not yet diagnosed, can you imagine what it would be like if you went to the neuro by yourself and received a fatal diagnosis. How in the world could you focus on the important information that would follow that kind of news? The doc is telling you what to do next and your thinking, "Oh shucks! I'm going to die! Oh shucks, I'm going to die!" You'd probably not hear anything after the words, "You have ALS."

Nope! If you think there is a chance you may be diagnosed with an NMD, bring a family member or close friend with you. You will be glad you did.

 

[mybrother]

new member

My brother is going to be a new member of this forum!. He should be on here soon. His name is Rick. I have told him how helpfull this has been to me and he is looking foeward for your support.

Thank all of you,
Mary

 

[Al]

Looking forward to hearing from him Mary.

AL

 

[mybrother]

new scientific research

Has anyone read about the the new skin cell developement/stem cell research? I've read reports from CNN that state it could be months before they may find out how ALS affects motor neurons. I also saw on the MDA website were they are working on a vector . I am very hopefull that next week or new President will reverse the band on stem cell research. What to you think? Has anyone heard any promising information on this?

 

[Al]

If you check down in the research forum there are some new threads there.

AL.

 

[Marjorie R. Wilcox]

Would it be easier to buy women's knee socks at your local store?