Floyd Parton - Post #1 Hello

[Floyd Parton]

Hello,
My name is Floyd Parton. Tomorrow I go see my neurologist to review the results of all my medical tests. We have been talking all along and I already know what he will tell me. After I get the "official diagnosis", I will begin working on getting my 100 percent DAV paperwork in and start working on social security disability. I am 59 and never had any health issues prior to this. It all started in November 2011 with twitching in my thighs. By Feb 2012 the twitching/fasciculations were all over my body. I began seeing my neurologist in April and he is a wonderful doctor but the news he has for me was not what I wanted to hear. I already have weakness in my right leg and my right arm, but am still walking. I understand everyone has their own unique journey with ALS. I am beginning my journey........cheers.....fp

 

[panguinjen]

FP,
Welcome, sorry you're here, but ask questions... We use PVA as our advocate with the VA... Hope yours goes smoothly... Ours took 8+ months....

Jen

 

[marypat]

so sorry u have to find us but very glad u did. u will find lots of great information and support here not to mention so great laughs. ask anything somewill answer

 

[sadiemae]

Amazing How many cases of ALS there are in Tennessee

 

[momap53]

Welcome aboard, Floyd. Our thoughts and prayers are with you today as you visit your Doc.

Lori, I'm hopeful that the ALS Registry at the CDC will provide a lot of information that will give researchers some clues.

 

[BeckyW]

Hi...sorry to meet you here but this is best place to ask questions and get support. We laugh and cry together. Welcome Pal.

 

[Floyd Parton]

Thank you all.....as expected, the doctor said I am healthy as a horse....except for the ALS. Tomorrow is my last day at work. I have an appointment at the Vanderbilt Neurological Clinic on July 19. They have a clinic that specializes in ALS patients so they may be able to help extend myn life for me and my family. I may participate in some clinical trials if the opportunity presents itself. I do not know how many people have ALS in Tennessee. I am in touch with a lady whose father died from ALS about a year ago. She has been a big help. She told me of a young soldier of 24 who could no longer do push ups and he discovered he had ALS and passed at 29. I understand as of Jan 2012, ALS is supposed to be considered service connected and eligible for a 100% disability from the Vetrans Administration. I am retired from the USAF. I worked in weather. Hopefully that process will go smoothly. Then I will officially be retired from my current job as of 01 Sep where I will apply for social security benefits. Again, thank you all for the kind welcome. I will participate in the forum as long as I can. I have a lot of people praying for me and God can heal what the physicians can't if it is his will for me. All the best to all of you and to your families. I am very early in my journey......take care.....cheers.....fp

 

[frankb]

Hello, Floyd: Sorry that you had to meet our group this way, but please be assured that you are among true friends and compatriots. I have been blessed with information regarding ALS from gracious PALS that probably was very hard to obtain from other sources, specially regarding questions pertaining to VA benefits, and what to expect in the process. I am still learning, and mostly from our friendes on the ALS Forums. An earlier post mentioned the PVA (Paralyzed Veterans of America). PVA really got the ball rolling for me regarding VA eligibility/application and relieved a lot of my anxiety following my initial diagnosis of ALS. Please check this organization out on the web. It will well be worth your time. Also, an earlier post mentioned that it is surprising that Tennessee has so many PALS. Looking at statistics from a veteran's point of view, it is reported that 60% of ALS patients are veterans. Since Tennessee has many military retirees as well as other veterans it seems reasonable that my neighboring state to the north would have more that it's share of this dreaded disease. Here I go, rambling on again. Anyway, no question is too small or too large to ask on the Forum. God Bless ! !

 

[CathyP]

Downside: Sorry you had to join the club. Upside: Everyone here is fantastic. Check your visitor messages. I am going to post one.

 

[HelenL]

Welcome to our forum family... sounds like you have a great attitude, and that helps a lot. We're LIVING with ALS, not dying from it... well until it does I guess.

 

[amyst]

Hi Floyd, wellcome to the forum.
I'm brand new to this als journey myself. I also live in Tennessee and I went to Vanderbilt clinic last Thursday for my als 2nd opinion.
I saw Dr. Donofrio and like him. My understanding is Friday is the als clinic day. Your appt. Is on Thursday also, so I assume you will be seeing a neurologist only to confirm your diagnosis and answer any questions, then you start going to Friday clinics if you choose.

I think he said 2 new trials would be starting soon. I have no idea what they are. I thought I was prepared but it all seems like a vague memory now.
I would definitely take notes. I wish you the best!

 

[pearshoot]

veterans now have a 65% greater chance of being diagnosed with als than non-veterans retired army 1973 who would have thought about als at 74 two tours in vn thanks agent orange just wait till desert storm starts showing up contact the pva in your regional va office to handle the paper work for you they get more done than you can on your own. i am in my second drug trial it is important to put your name on the volunteer list and if in reasonable commuting distance be ready. i drive 190 miles one way to participate best advice i can give right now, get your body as healthy as possible and start a light exercise routine

 

[notgivnup]

Floyd,
Welcome to the family, so sorry you needed to find us but you will be so happy you did. We can all relate, we share our knowledge and experiences, things even doctors don't know about. We all do progress differently but are still in the same boat together on this new journey that begins with each new day. Hoping the best for you and nice to meet you. {Hug}

 

[notme]

Sorry you had to join--but glad you found us. This is a great group of people here. Yes, your SSDI will be approved after teh 5 month wait. If you have enough active duty time, so will the VA.. Medicare kicks in the day SSDi does--no two year wait for it as others have.

Keep that positive attitude! Enjoy every minute with your loved ones.

 

[Floyd Parton]

Thanks Frank.....I am sure I will have a lot of questions in the coming months. I am glad I found this forum on the internet. It appears to an oasis of information and participants are such supportive, caring people.