trying to come to grips

[scotslassie]

As sunewun says, we understand and are here for you. Ask away, rant and rave, we will listen x

 

[BeckyW]

Welcome to our ALS family.

 

[kimmyk]

I too was diagnosed on 09/05/12. First its sucks. I hate all the attention. I want to handle this gracefully and I am not doing that so well.

 

[ottawa girl]

KimmyK,

ALS is not graceful - so don't worry about handling it gracefully. In my experience, people who care about me, are sympathetic, empathetic and eager to help.(sometimes a little too helpful Ha!). I resisted at first with a fierce bravado - but now I just let myself love and be loved.
At the end of the day, love.

 

[machaffi]

Kimmyk I am sorry to hear that you had to hear those terrable words. but being selfish it does let me know that someone else is at the same part of this process as I am. By the way, it will be my first birthday tommorow with this disease.

 

[sadiemae]

Just remember, you will wake up tomorrow and you will make it through the day. My husband was D X om 9-03-09 and he is still here and able to enjoy his life. It is different, but he is still living with ALS. Your choice on how you live it!

 

[prattstar]

Macaffi

My heart goes out to you. I was DX on sept 10 this year.

There is some confusion over my DX and the use of the term benign. Which it seems is a term my neuro has used with several other patients I have been in contact with.

The news is so fresh for us as well as you. I have my very emotional moments and have some laughs as well.

I will be happier when I've had my follow up.

I wish you well during this very difficult stage but I have found enormous support from the regulars around here and take great comfort from their support and advice.

Ian

 

[notme]

Hi

I'm not sure where Lutz is, but the ALSA here in FL is just great. They found me my neuro and ALS clinic in Tampa, and called to get me in very quickly.

Their nurse will come to your home and answer any questions you and your wife have. They are absolutely wonderful people. I speak with a woman named Kathy. Not sure who is in your area.

If you are near Tampa, I'd highly recommend USF ALS clinic and Dr. Katzin. She's just awesome. Very sweet, and very professional at the same time. She's always taken time to answer my emails to her, even if it takes her a day or two to do so.

I'm so sorry you had to find us.

As to what's next...that's complicated. There are so many things to think about. If you're a veteran, you'll want to contact the VA, as ALS is service related and covered. If not, contact SSDI, as it's an auto approval, and after the five month mandatory wait for everyone, there is no wait after that for medicare. It starts when the checks do.

You don't mention where you are at symptom-wise, but I do suggest learning to use any adaptive devices before you actually can't get by without them. Many items will be available from the ALS loan closet, so don't spend money you may not need to.

You'll want a neuro clinic that is multi-disciplinary and can deal with all areas, such as respiratory, occupational, speech and whatever else comes up.

This site is a great place for friendship, ,oral support and some great advice on the questions you'll ultimately have.

It takes time to adjust, but there is one thing I can say without doubt. You did not cause this. You have nothing at all to feel guilty for. Absolutely nothing.

Welcome to the site.

 

[machaffi]

notme I am in the tampa area I have an appointment Tuesday at USF I am starting to have some problem with speach and have had problems with swalling over the last several months. I started having cramping in both hands back in the spring but I am losing strenth in my left hand now. Prattstar my doctor was very certian of my diagnoises but I still try to throw up every possible road block, so I feel for you. I dont think these doctors understand that they need to make sure that we understand exactly what they mean and any possible thing that we can latch onto we will. I hope your follow up is soon.

 

[pearshoot]

on capital hill last may we visited various offices and i was able to tell my story with no trouble. at first office i tried to talk about my wife and ended up crying so discontinued that from there on. we continue to do well each day but i cannot talk about my wife. been married 57 years in dec. we now have everything in order, closing on a handicap accessable condo tomorrow, downsizing from large home on 3 acres try to stay ahead of the game.

 

[pscheffel]

I still have days where I re-live the doctor telling us my Mom has ALS. I'm very sorry.

 

[notme]

Machaffi, let me know who you see there. Should be either Vu or Katzin. I haven't been there in a while. I just got frustrated with the entire process. And a 2 hour car trip is painful for me.

I'm content for now just treating symptoms

 

[machaffi]

notme I saw Dr Vu or actualy most of the time with a dr in training she did a new conduction test and emg. took three hours and was little rough I looked like a pin coushin. I have a follow up on the 15th.

 

[machaffi]

sorry for that post sounds like I am crying I did not meen to sound that way. I did not meen for it to sound like she was rough either.

 

[ottawa girl]

I didn't read any whine whatsoever in your post! God knows you'd be entitled to whine and yes even sniffle a bit! Three hours - wow.
Be careful when drinking liquids- it may well leak out through the many pin holes.
That's a long long test. It's no doubt a rough procedure- no matter who administers it.

Wishing you good results on the 15th.