My introduction.

[Eddie Kirk]

Hi members and Staff;

I am Eddie Kirk.

I have been having some changes occur to my health. I am seeing a neurologist. He has said that I have early onset ALS.


He is kind of saying that this may be ALS: although I have not gotten a firm diagnosis.
This has started on my right leg. For a long time, (6months) my right leg felt like it weighed 200 pounds. I had to use a walker. My weight has dropped to below high school weight. Now the right leg muscles are twitching. Under the skin you can see the rippling. I have had an EMG (one) I have also had a swallow test? Where they found I had something wrong with my tongue. I have been choking on things more than normal. I was given a long list of things to eat and not eat.

Okay. I have been reading the forum for about a day. But have read other things on the net. I am getting worried. I see others preparing for the eventual outcome of the disease. There getting chairs and beds and other things I guess they will need. I also see that most do not receive diagnoses until the disease progresses further and then they only live another few years.

I am on SSI and get about 700 per month here in Oregon. So I can not afford the items I see others have. I do have a family; Daughter 21 living here helping take care of me. I also have a wife who is disabled herself and will not be able to do much for me as these symptoms’ progresses.

I do have tons of questions, I would like to know if anyone else has experienced the heavy feeling in there lower extremities.

I own and operate a web forum in Portland Oregon for medical Patients.

I did not think I would ever be told I may have ALS. Right now I feel fine. I do fall on occasion now and my head is ringing constantly. I have lots of weakness. I don’t know where to start. I do have another appt to see the doctor in two days. (Neurologist)

Thank you for having me. And I am sorry your all here.

God Bless you and the members here.
Kirk

 

[vzandt]

Welcome to the forum Kirk. Hopefully we can help. If your on Medicaid you should be able to get what you need. When you see your doctor..ask him to refer you to an als clinic. Ask questions. We are all in this boat together.

 

[Eddie Kirk]

My wife is saying I have medicaid, I will see Doc on the 28th and report back here. I will ask to be refereed to an ALS clinic.

Welcome to the forum Kirk. Hopefully we can help. If your on Medicaid you should be able to get what you need. When you see your doctor..ask him to refer you to an als clinic. Ask questions. We are all in this boat together.

 

[Eddie Kirk]

How many people are on this web site?

 

[caldona]

If you have Medicaid it should pay for everything except maybe a shower chair it will even pay for some home care

 

[Eddie Kirk]

If you have Medicaid it should pay for everything except maybe a shower chair it will even pay for some home care

Thank you for your reply.
This brings me lots of relief.

 

[Luke]

Welcome, from a fellow Oregonian.

 

[HelenL]

Kirk, also check with the different ALS organizations in your area for loaner equipment and grants to help out. If you're a vet the VA handles it for you. Sorry to see you here, but welcome to the forum..

 

[Eddie Kirk]

Kirk, also check with the different ALS organizations in your area for loaner equipment and grants to help out. If you're a vet the VA handles it for you. Sorry to see you here, but welcome to the forum..

Thanks I am a vet. Though I have never been to the VA.

I did see the Doc again today. I asked a bunch of questions. They did not tell me anything new. Just that I would need another EMG and they want to look at the possible cancerous nodes they found during an MRI. (with contrast this time).

So yeah , Ah.. thanks for the welcome. I will be here until I know more.

TY for the welcome.

 

[Eddie Kirk]

Welcome, from a fellow Oregonian.

Hi I am in Portland.

TY for the welcome.

 

[Luke]

Same here. Born and raised

 

[Eddie Kirk]

Same here. Born and raised

I went to Gresham High School. But was born in Ca.

Happy Holidays.

 

[Jeff Long]

Lots to do...

Eddie,
First, sorry about your need to be here. Second, there may not be anyplace better!

I will tell you what a kind member here (thanks, Miss!) shared with me last year when I started this same journey. And I'll do it in one very short sentence:
Contact your local Paralyzed Veterans of America (PVA) rep RIGHT NOW.

When I retired I did not 'register' with the VA to establish a disability rating for the many parts that broke over 23 years. Wasn't my nature and I figured it to be the cost of doing business--a business I eagerly volunteered to be in and love even now. But ALS is going to be a challenge, and we're going to need the help so I listened to Miss. I hope you will as well.

My PVA rep sent me all the paperwork (online) and filed everything for me when I returned it to him. I sent it in December and received my final rating the first week of April. That's about warp speed in VA-time.

If you served on active duty, then when your doctor makes the diagnosis you will be considered 100% service-connected disabled. The VA will send you a package that outlines a host of benefits for you (monthly disability pay, medical care, life insurance, home & vehicle adaptation) and your family (dependent's educational assistance).

If you would like, I'd be happy to have a PM conversation and/or chat on the phone about the process and the potential potholes along the way. Either way, God bless you and your family.

Semper Fi,
Jeff

 

[Jeff Long]

Response headed your way (but via moderation!)

Hopefully it shows up soon!