playing the dealt cards

[pearshoot]

feb/2010, three years ago neurs 3 and 4 together said sorry you have sporatic als, go home and get your affairs in order, it is fatal, you have 3-5 years, there is no cure. on this site was told you have to play the cards you were dealt. no one told me what the game was so i chose five card draw. year one five cards dealt, year two viewed cards, pair of tens, king and trash, discard two, two new cards, year three able to look at third card, WOW! another ten. can't look at fourth card till year four. might be another ten or king. even after being taken to the woodshed on several occassions i still believe there are things you can do to extent life expectancy. with four of a kind or full house my belief will be re-enforced

 

[vickim]

I believe that postive attitude and hope goes a long way. Keeping busy with what ever you can and friends, family or any outside contact is good. Talking to people here have helped me alot. My family is great but they don't know what I am going through, keeping emotions strong for them gets hard. COming here there is people who will not judge and understand. Know that everyone here sends love and prayers is a great help too. I pray your cards are good. Hugs.

 

[bob_s]

pearshoot,

I like the idea about one card a year.

Hope they get ck357 to market in time for you to play another round.

I am going for initial screening assessment for ck357 2b trial on Friday.

 

[pearshoot]

isn't it surprising how long it takes to get to phase b after phase a finished in nov/11 and all the hoop a law. it worked and sure wished i could have continued with it. hope i am still around when the fda stops delaying something that worked for me as our window is very small

 

[daigs]

I was told I had the same kind and my doctor told me the total opposite. He told me there are new trials I can enter and NOT to give up. He said that it effects everyone differently and one case is never like another. You may want to find a new doctor who isn't so willing to give up so easily. Even if I tried to give up my doctor would kick me in the behind. My doctor s, nurse practitioner, and nurse are a big part of my support system I hope you can find that. Vicki is right, no one knows or understand s what we go through every day. I wish you the best!
Cheryl

 

[wattif]

I agree. It is definitely time for a new doctor.

 

[halfin]

I like that anology. There is always reason to hope. I am too far along for clinical trials, having a tracheostomy. And I think most of my nerve cells are pretty much dead, so I don't particularly expect to benefit from therapies that slow progression. My hope lies in technology, for communication and assistance. I saw an article about Stephen Hawking, and the research Intel is doing so he can communicate faster. They are working on facial expression interpretation; aparently even with advanced ALS there is some facial expression remaining.

As far as doctors, I am lucky to have a neurologist that is an old college buddy, of mine and my wife's. He is always upbeat and supportive. He cuts through the insurance red tape and is always trying to help.

Really I have been lucky in so many ways, I hardly mind the disease.

 

[pearshoot]

in all fairness i was diagnosed at washington univ in st louis, since then i go to ku med cntr als clinic every three months and their drug trial clinic. they are now family to my wife and i and we don't mind the 190 mile one way trip. fell last week, fracturing three ribs and they called today to check up on me.

 

[vickim]

I too was diagnosed at washington univ in st louis. It is a wonderful hospital. This was after 5 years of being passed off to 2 other neuros and 3 gps. It is hard to find a doctor who will listen and not look at you like you are a nut. I am so glad I have found a good one who did listen and gave me answers.

 

[pearshoot]

my visit to wu was good. it didn't upset my they were blunt about what layed ahead. two months before that neuro 1 said ' suspect als' so the reality was already there. i go to ku med cntr because its closer and the va required a second opinion before approving disability. wu is a great placei

 

[johnnyliverpool1]

taught me sheepdog to play poker..sadly, everytime he had a good hand he couldnt stop his tail from wagging..........sometimes you just cant win.....hopes you get a royal flush..johnny

 

[Barbie]

I won't let my dog play poker because she can't hold her licker...


I think a positive attitude goes a long way in survival. of course, It is usually the people who are positive before ALS that seem to get the greatest benefit from this. I wish it was so easy to think positive thoughts and feel positive, but it seems like some are half full kinda people and some are not (I am in the latter but my pals is in the former).

 

[bob_s]

pearshoot,

20 weeks of phase 2b. Then phase 3. Very long process. If I get in 2b, I will be cut off when it ends.

Isn't ck357 "fast-tracked" for FDA approval? Whatever that means.

Bob

isn't it surprising how long it takes to get to phase b after phase a finished in nov/11 and all the hoop a law. it worked and sure wished i could have continued with it. hope i am still around when the fda stops delaying something that worked for me as our window is very small

 

[jellis86]

I go in 2 days to the Mayo Clinic for my 2nd opinion, or maybe I should say an official diagnosis.

My current neurologist has kind of ticked me off with his "if you have ALS there is nothing we can do for you" attitude, But I say HOGWASH!

If ALS is the official word on what I have, I do not plan on sitting down and waiting for what's ever next to happen. I agree with you guys....there are things that can slow progression and staying positive is possibly the most important thing!

halfin...talk about positive!Really respect your attitude towards this disease!

 

[vickim]

Good luck on your appt. I am hoping your 2nd opinion has a different result. I agree about the positive attitude, I have had trouble with that lately but I am working on it. I say we kick butt and take names later!