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Pidge

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Joined
Sep 12, 2009
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99
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Loved one DX
Diagnosis
08/2009
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US
State
OH
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My son who is only 22 years old has been diagnosed by his neurologist w/ ALS. A few months ago he got a good job bought a new car & was talking about going back to college. He has gone from a kid full of boundless energy to not being able to get up & down stairs without crawling in a matter of months. This is so unbelievable now we really don't know what we are doing. We have a very strong family support system and my son has a great attitude he keeps us cracking up all the time with his jokes he always has been a comic. I guess what I am looking for is advice on how to be the best mom I can be in this situation and any financial guidance (he has no ins. no savings no retirement plus a new car to pay for and a couple of college loans.) Any Ideas
Pidge
 
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Re: Can happen to anyone

Pidge,my heart goes out to you I don't have any answers but please know I wish you the best I am certain that with time and input from this forum you will get great guidence.Peace be with you.
 
Re: Can happen to anyone

That is a way to young! My heart goes out to you.
 
Re: Can happen to anyone

I am so glad to have found this forum I know it will be a great support every time I think why us I quickly realize it's not just us
 
Re: Can happen to anyone

Pidge,

I'm so very sorry about your young son! Has he been to an ALS Clinic? If not, I would suggest that he go. The social worker there should be able to help you determine what government programs may be available to help your son financially and medically. I would also talk to a lawyer about what could be done about the student loans and the car loan. Or the social worker may be able to refer you to a pro bono attorney in your area that specifically works with pALS (people with ALS).

You also need to contact the MDA and the ALS Association for their help if you haven't already.

Welcome to the forum. I think you will find lots of support here.
 
Re: Can happen to anyone

We are going to Cleve Clinic this Monday the 14th
 
Re: Can happen to anyone

Good luck! I hope you will keep us updated on your son.
 
Re: Can happen to anyone

I am so sorry to hear your son was diagnosed. CJ offered some great tips and I hope you get more information at the Cleveland Clinic. Welcome to the forum but sorry for the reason you are here.
Dana
 
Pidge-

First let me say, I am so very sorry your son has received this diagnosed. And, as a mother, I can't begin to imagine your heartbreak & pain. It must be unbearable right now.

There is another member here whose son received this diagnosed last year. Her name is Valya; if you do a search for the thread "Doc said... your 18yr. old son has MMN or ALS", you can read her story. I don't know if this will be helpful to you or not; just thought maybe knowing you are not alone in this could help.

My thoughts & prayers are with you & your family. Mothers are a force to be reckoned with; they can move mountains when it comes to protecting & helping their children!
 
Re: Can happen to anyone

i do know excatley how you feel it is awful and we are so helpless to fix it i should not define this as it is awful for- anybody here and thier familys a lot of emotions will come to you and i believe you will be able to think clear in time the panic is strong right now do not worry about bills right now you will only make yourself worse . best of luck to you and family exspecially your son
 
Re: Can happen to anyone

That is so terrible ... it breaks my heart to think of anyone so young and full of life stricken with this. I will be praying for you and your son.

He will be in great hands at the Cleveland Clinic, and it sounds like his attitude and zest for life will carry him through this. Steven Hawking was only 20 when he was diagnosed with ALS, and he is alive and vibrant 30 or more years later. There are many research projects that seem to be nearing fruition and offer much hope. Keep your own hopes alive for him.

CJ's advice was excellent: MDA (Muscular Dystrophy Assoc.) is a source of all kinds of assistance, including financial toward treatments, and ALSA knows everything you will need to know in fighting this battle.

I know your Higher Power will give you the strength you will need.
 
Re: Can happen to anyone

Hi Pidge, I do know what you mean. I'm turning 27 soon, and I just got my diagnosis confirmed. My symptoms started just few weeks before my 26th birthday. My doctors are also saying I'm too young, but having talked to people on forums, I realize that there are more and more young people getting diagnosed with ALS. Someone sent me this link, on a teenager who has ALS. She's 17.

YouTube- Teenager Diagnosed with ALS

I'll be praying for your son and your family, and I'm so glad you're here. Your son is very lucky to have you with him!
 
Re: Can happen to anyone

Thanks to all who have commented I look forward to seeing each new comment hopefully I can give as much as I get. I hate this disease but I have loved some of the places it has taken me mentally & physically. That sounds dumb but I'm sure somone understands.......
 
Re: Can happen to anyone

Hello Pidge.

I'm so very sorry to hear about your son being diagnosed. It shouldn't happen to a anyone but when it affects the young, it's especially cruel. As a mom in the same situation, I know exactly what you're feeling and my heart goes out to you.

My son Johnny was diagnosed last year when he was 18. We believe his onset was when he was about 16 1/2 and still in high school. All the neuros said he would have a slow progression but it doesn't appear slow to us and if one more neuro says that, I'm afraid I'll let them have it with the rage of a mother bear. It started in his left hand, moved to right and now is affecting his legs. He's lost quite a bit of function in his hands, has trouble with many daily activities. Just in the last few months, his walk has changed dramatically. He has fallen several times, including face plants in the parking lot at his work resulting in scrapes on his face. He's started doing this odd little muscle jerk/reflex when he's seated, and his entire body will shake as his legs jerk up and down. It's just heart breaking....

There are some pics of Johnny on my profile, which I need to update. I don't come here when I'm too depressed tbh but I just need to get over that. I'll update later today. Have some new pic of his hot chili plants and, just for Al :lol:, more pictures of that P38 flight simulator.

Anyways, I honestly have to go. I just wanted to post that you are not alone and I'll send you my contact info via pm.

Valya
 
Re: Can happen to anyone

Thank you Valya, I hate hate hate young people getting sick. I am 42 and feel like I am old compared to your children, I often think of Johnny and just get angry for a cure, yesterday. I know love is all we feel for our children, seeing your children going through pain is just not fair. My son is 14 now and I see his hurt from having a mom who is going through a illness, and he is smart enough to realize that it is very likely genetic in our family. People mention it in front of him one time too many. This crap is so hard for the family, I think of people like Joel C. living a happy life with disease, and I get strength.
I believe in living with MND, and believe that we might just see a cure. So many good people on this forum a cure cannot come soon enough..
 
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