Diagnosed......

[pvale]

Notice to the left. Went to St. Louis today to Barnes-Jewish and saw my neurologist.
Diagnosis is now definite ALS, bulbar and limb onset. 2-3 yrs if I don't trache and vent.
Will have to go back shortly for a modified barium swallow test. And then we'll talk about getting a PEG fitted. Come back in three months. Went in and out in a wheelchair. FVC is 72%, so they want to get PEG fitted before it drops much lower.

So, here I am. I can still walk very carefully with a walker, but it wears me out if I have to go far. I'm using a Invacare Pronto M51 that I was given around the house right now. I've been measured, and insurance has approved a Permobile C400 with all the electric options, vent tray and Roho cushion. Stupid insurance co wouldn't approve a Quantum 6000 chair. Go figure. I hope I like a front drive chair, because this M51 is a mid-drive, and is helpless in my rough backyard.

BTW, is there anyone other than me that has a need to run 12VDC devices from the batteries on the chair? Insurance won't pay for it, but I can get a 24VDC-12VDC@20A DC-DC convertor for about $70. I've got a netbook that will run from 12VDC directly.

Perry

 

[Zaphoon]

Perry,

Well, that just sucks! At least now it seems to be written in stone and no more guessing.

Is the unit at Barnes/Jewish seperate from the Wash U clinic at the center for advanced medicine - 6th floor?

That's where I've been seen before but they couldn't diagnose me; had to go elsewhere.

Zaphoon

 

[pvale]

Yep, it's on the 6th floor in the Center for Advanced Medecine. I see a Dr. Muhammad Al-Lozi there, and he told me today that it's definite.

 

[Al]

Sorry to hear that Perry. We're here for you if you need moral support.

AL.

 

[handinhand]

Sorry to hear of your diagnosed. the one thing that is good is the caring folks on this forum.... I try and check in a least 3 times a week. It is something I do for myself..... We are all here for you... Linda

 

[pvale]

Now that I'm not working, I try to check in here at least a couple times a day. I am very appreciative for the people on this forum, who know first hand what I am/am about to go through. I hope that when I've settled into acceptance of this beast, I can contribute a lot more. I must say I've given serious thought to taking the chicken way out, but half of my life insurance policies won't pay if I do that. So, it is what it is, and it's going to be a strange journey.

 

[John1]

Pvale,

One ray of light in this is that where you are right now is in some ways the worst time. I found the period of the first few months after diagnosis with the accompanying fear, dread, life-turned-upside down feeling to be the most frightening part of the journey. Believe it or not, it will likely get better once you've had a chance to accept and reorient your life. And you have a whole new set of friends you didn't know existed.

 

[Taryn1]

Pvale,

I'm so sorry to hear your diagnosed. My thoughts are with you.

 

[dldred]

Perry,

I think that Johns post is so true. Right after my moms diagnosis that was all I could think about and read about. I was filled with dread and anger. After a few weeks it just kind of blended into every day life. We don't let it be the main thing on our minds and we enjoy our lives much more. In some ways this has helped us be better people and I have learned to stop worrying about things I can't change. My mother says " I can't change it, all I can do is make the most of the time I have." We laugh at stupid little things and I hope you can do the same eventually. If you ever just want to vent or lash out or tell silly little stories I am hear to listen and try to help.

Dana

 

[kpou]

ALS Question

Hello,
My father was diagnosed with ALS on Tuesday. He has progressed dramatically since June. We will call on Monday to get an appt. at Baylor in Houston on Monday.
Our family is devestated. So many thoughts are running through my head.
I have so many things to say to my Dad but I do not want to think we are saying our goodbyes at this time.
Is there an appropriate time to take this step? I don't want him to think we have given up.
Since June, he has had progressive weakness in his legs - cannot get up out of a chair and drags his feet as he walks through the house. His voice is very rocky and he is beginning to slur. Initial Dr.'s visit confirmed it is affecting his lungs at this time.
I have thought about writing a letter and holding on to it until his acceptance is acquired. I know that this road will take our family through many differnet journeys over the next few months.
I don't want to miss the opportunity to say what I want to say.
My prayers are with each and every one of you who are traveling down this same road.

Sincerely,
Kathy

 

[BethU]

Kathy ... I'm so sorry about your dad's diagnosed. I think your idea of writing down your thoughts in a letter is excellent. With such a fresh diagnosed, it's going to take your dad a little while to wrap his mind around this, too.

You'll know when the time is right to start a conversation about how much he means to you.

Take care.

 

[thelma313]

Kathy, I absolutely know what you are going through and all the thoughts that are racing through your mind. When my dad was diagnosed he was extremely emotional and we hugged a lot. The only things I told him at the time were that I was going to be there for him every step of the way because he has always been there for me when I really needed him. I also told him we were going to fight as a team and that he was not going to face this alone. Of course he know that. We're a close family but I wanted to say it. I think you should follow your heart and if your heart is telling you to write it down and save it for a bit then that is what you should do.

I am truly sorry that you are facing this right now. It is definitely a journey but even if you don't think so right not you will gain the strength to face it and your strength will surprise you.