Andy McGovern Sr.

[andymcg]

I just came across this web page: "ALS/MND.

I am a patient with this disease for the past 34 years. Diagnosed in 1978, but had the symptoms in 1976. I just want to tell some of my story. That may be of benefit to others diagnosed with this disease. At first, one arm was affected, and a year on, the other one become very weak. At the moment, the two arms are almost useless and are in skeleton presentation! However, the disease did not spread to any other part of the body, yet? I was told by my neurologist, that this disease would take my life in five or six years. That was the prognostic life expectancy. The first 10 years, with this disease was actually hell, as everything fell from my hands and eating and dressing become an impossibility. However, 20 years ago, I visited the holy shrine in Lourdes. And I believe that I got the greatest gift given to anyone: "that of acceptance." I become a happy person, not dying with the disease but living with it! I take no treatment whatsoever. I write with voice recognition. Wonderful technology. I am writing this as a message of hope, to others diagnosed with this disease. I would love to be of help, and inspire others to hang in there. A cure will eventually be found. I am a prisoner of hope. Andy McGovern.

 

[joelc]

Thanks Andy, welcome to the forum.
WOW, that is a long time to live with the diagnosis. You have definitely been blessed with a very slow progresion. Still having your voice is fantastic.
I try to have the same attitude as you and am mostly successful.

Look forward to hearing more from you!

 

[John1]

Welcome to the forum Andy. That is a remarkable story you have. You are one of the very rare individuals in whom disease progression has stopped. Perhaps you hold a part of the puzzle that might lead to understanding more about this strange malady. I completely agree that acceptance is a vital part to living with ALS. I hope we hear more from you.

John

BTW, I'm just across the Pond from you.

 

[Miss]

Unbelievable story! It should be an inspiration to all who read it!

 

[andymcg]

Hello John, my Canadian, fellow, colleague and friend. Thank you for your comment and Post. Yes, this disease, knows no boundaries, Borders, ethnic, color, creed, or religious divides! It attacks people from all walks of life, regardless of occupation, profession, political or celebrity status. Yes, I know that I am fortunate to have survived for so long with this disease and to have enjoyed an impaired quality of life. I'm not writing on this forum to gain praise, credit or personnel recognition. I'm writing simply to lift the spirits of my diagnosed friends. I believe that research into treatment or even arrest of this disease is far too slow. One of the greatest disadvantage into research is the rarity of this disease. One in 40,000 per population contracts this disease. If the disease were ever to reach population proportion of cancer (God forbid.) Then, I believe a cure or treatment would have been found many years ago. In the meantime, we must stick together, shout to together in an effort to accelerate research into finding a satisfactory treatment. Yes, there are half one million registered sufferers with this disease in the world as I write. Go well, my friends: Andy.

 

[andymcg]

Thanks Missy. My thoughts are with your husband today. A Disability can ignite dormant talents in a person and can actually become the ability to pursue other activities! Advanced Technology has eliminated many disabilities. Thank God for today. Andy...

 

[andymcg]

Great to know of your attitude to this disease. I believe it's the key to survival. I know of three people here in Ireland, who are longtime survivor. One 22 years, one 29 years and myself 34 years. We are meeting at AGM's for many years. There is always humor, jokes and laughter, when we meet. I think that the neurologists attending those meetings are getting fed up, looking at us

 

[Danijela]

Welcome Andy. Great to hear something positive. Were you told you had a form of MND called monomelic amyotrophy? As you mention that the disease did not spread to any other parts of your body it would point to this rare form of MND.

All the best, and many many more years of no progression.

Dani

 

[andymcg]

Hello Dani. Thanks for getting back to me. I was never told, what kind of ALS/MND I've got. I was just told that life expectancy was about 2 to 5 years. I had twitching of the muscles from my ankles to the chest wall and plenty of cramp. That has all subsided now! I got the opinion of three other neurologist in different hospitals. They all agreed with the first diagnosis. I haven't visited a neurologist in 20 years. I met one of them at a MND AGM. He looked at me as if I were an apparition . He said: "How are you doing"? I said: "I'm great, I've got no power in my hands or arms, but I'm great."

 

[Zaphoon]

Welcome aboard, Andy!

I love your story!

 

[Miss]

How old were you when you were diagnosed?

 

[andymcg]

43 years when first diagnosed. Yes, I have a few gray hairs now, but there are only a few. The rest has vamused

 

[andymcg]

Thank you Zaphoon . Always remember that we are living with this disease, not dying with it. If you can smile today, that's more than a lot of able-bodied, heathy people can do ?

 

[Miss]

Okay, that is unbelievably inspiring! Incredible! I thought for sure you were going to say you were about 22 - 25. What hope you give us all!