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notgivnup

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PALS
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11/2010
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OS
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I was just last week diagnosed with ALS after 3 years of everthing else diagnosis'. I still refuse to believe it, there are so many things it could be. I go for more test tommarrow, agian EMG/NCV, then speech theripist, pulmonary specialist, My speech and breathing is fine I believe, walking is difficult, left drop foot, right getting weaker, twitching and muscle cramping always. I just wanted to connect with someone, my kids, grown have no idea what this is all about and dont seemed to concerned, which in a way is good I dont want them to worry about me. From all I have read if the diagnosed is right I do not know how i will cope with the finacial end because I am single with little money and my kids have none either. Until they beat it in my head that this is right diagnosed I am holding out hope and grasping at as many straws as possible. Thanks for listening to me rant, Reading orhers post shows me I am not alone in this and my prayers are with you all.
 
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Prayers for you that this diagnosed is wrong.God Bless
Sharon
 
Thank you so very much for your prayers, prayers DO make a difference.
I will pray for you also and that in Him we can find our strength.
I feel as though I am groping around in the dark looking for the right road to take right now. But never giving up hope.
God Bless
 
My husband was diagnosed with ALS a couple of months ago. We have learned that this disease is one that automatically qualifies you for Social Security Disability and also Medicare, no matter what your age. There is quite a process to go through, and the initial application is on the internet: Social Security Online - Disability Benefits

For ALS, they waive the 24 month waiting period that is usual for SSDI recipients. The web page also has information about SSI and Medicaid.

Another helpful organization that might be available to you is MDA. As a neuromuscular disease, ALS is under their umbrella. You can go to the MDA website (Welcome to MDA, Helping Jerry's Kids) and enter in your zip code to find a Hawaii location. I found them to be really helpful with information, and they will tell you about services that are available. In Anchorage, they have a lending "library" where you can borrow equipment as the need arises. I do understand that depending on which island you live on, it may not be physically possible for you to get to, but it is worth a try. We haven't visited the local office or clinic here yet, but they have sent information in the mail and have been helpful over the phone.

Another website: Amyotrophic Lateral Sclerosis (ALS) - Welcome to MDA's ALS Division

This forum is a great resource for all kinds of information! I just joined a couple of days ago, but have been reading it long before then. Since we are so new to the ALS disease process, I really don't have much to share, but thought this might be beneficial to you. I'm sure others on here will have a whole lot more useful advice.

Good luck with your hope for a misdiagnosis. That would be wonderful for you.

Blessings,
Jo
 
My prayers are with you as you go back today for testing...for a different outcome but also for peace.
Hugs,
Ann
 
So sorry you have to be here. I'll be praying as you go to your appt today. Let us know how it goes. Love your forum name, keep up that positve attitude and God bless.
 
I am very sorry to hear about your diagnosis. I will be praying for you. Stay strong and keep the faith. Ted
 
I think everyone here understands where you are coming from. Like Ann, I hope you find peace with the diagnosis if you receive a confirmation of ALS.
 
Thank you all for your prayers, hugs and support.
I'm back from my EMG/NCV tests. The doc was so nice and gave me loads of info, talked to me the whole time. But he rulded out so many maybes, :(... He pretty much confirmed to me the neuro diagnosed. I still wasn't sold on it. Then later that afternoon I got a call from my neuro and he confirmed it to me as much as one can confirm this disease. But my brain says they still must have missed something and only time will tell. I plan to prove them wrong. Is this what they call denial? Well I'd rather live with the thought they are wrong, rather to give in and let this beast win.

Thank you all for the info, I have read some of the sites. I just feel so over whelmed right now, I feel as I am hanging by a thread for my life and so afraid to let go into the abyss of acceptance. How does one deal with this? I am so alone in this, no one to just hold me and tell me things are going to be ok. My Fayher in heaven is my only friend right now and He is the one that holds my life in His hands, this I know. But talking to all the faceless people here has helped me to share my feeling with someone earthly.

Thank you all so much for being there, but I wished none of you were here and I was the only one in the battle with this beast. My prayers go out to each and everyone of you for a miracle!
 
you are not alone we are all here for you anytime
 
I felt the same way when I was diagnosed. I couldn't believe it. Then over the next few months, I kept getting worse and I finally had to accept it. In a way this made it easier, as I was able to deal with the diagnosis more gradually.
 
I am sorry for the diagnosis, and loved the State of Denial, hating to leave it myself. That said, AKjo gave you some of the best ever places to find some real time help... and I hope you go ahead (you can stay in Denial; just tell these people what the doctor said) and start the processes to gain the help you need. And the Christian thread is a place where you will hopefully find help... The entire forum, however, will help you as much as possible. We're in this together. I'm sending you a hug and a squeeze. And, I also began with footdrop in the left foot. These left feet can be SO unreliable.
XO,
Ann
 
hello so sorry you need to be here. unlike a lot of people when they told me i had als it was sort of a relief to finally know and to know I wasn't
mental that it was areal diease. it took about a week for it to hit me this is terminal and I thought why I"m so happy. It took me a while to find this site it has so helpful and I feel like we are a sort of a family,disfunctional but what family isn't a little. It ok to be in denial but go ahead apply for benfits and if you find out different then call and cancel and say no thank-you. My prayers are with you,and remember God is in charge and he is never wrong,he loves you.
 
I want to let you all know how much comfort you have given to me through this difficult time. Thank you soooo much.
Halfin...I am from Santa Barbara also, born and raised. Back when it was a small town, I miss those days. Yes I was a surfer chick, love the beach, I quess thats why I live here, surrounded by beaches.
If I end up posting too much just let me know, i'll try and shut up but I need to talk to someone. My kids don't seem to what to or cant just yet. I know they are dealing their own way, probably in same denial as me. Like if we dont talk about it , it will just go away...:) My emotions are all over the place, and I have to constantly ask the Father to just hold me close.
Loved the hugs and kisses I got...Love and Hugs to you all, Prayers for a better tomarrow.
 
Yes, I'm a newcomer by SB standards, lived here 20 years.

Don't worry about posting a lot. We've all been there. I was in a daze the first few weeks. My mind was racing in confusion, I had trouble sleeping and couldn't concentrate. My kids too didn't know how to respond or what to do. (They are in their 20s.) They seem to do best focusing on the practical day to day details of helping out, rather than trying to think too far ahead. It's hard at that age to face the loss of a parent.
 
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