Charlie in Wonderland

Blue Skies,

I just had my clinic appointment at Beth Israel. They were nice. They were good. I'll order a wheel chair now to have in the wings. The doctor was serious but funny too. Irish accent. Pink shirt. Pink tie. Natty. He'd been bowling in my building.

I asked about a few things.

LDN not worth it to him. There is zero on it.

Monterrey unproven. Nothing published. Is that true?

The trial in Atlanta is the only one he mentioned to watch. Losing weight is what will be my end... so gorge (I guess).

Do as many alternative therapies as you like, just don't harm yourself. And, they COULD help. Who knows?

They have a trial going but I can't join because I'm allergic to Peniscillian. (sp?)

He told me I had definitely had ALS which hurt me all over again like I was hearing it for the first time.

It was fine. Although I did discover that I can't properly cough (anymore). Funny, the things you lose with this thing. My upper body strength is still quite strong. My FVC has gone down. A lot.

It occurred to me the for the first time that there isn't really any unity in the medical research world for ALS. It's all fragmented. When the cure comes, it seems like it will come out of the blue and maybe no-one will expect it.

Whenever I leave the doctors, I feel worse, no matter how nice they are. I guess I'm good at denial on a daily basis and then I have about six or seven people talking to me about my life span I get this thud in my stomach, a heaviness all over. There is no escape.

I hate being on the other side of the healthy people. I was on their side, just 24 months ago!!!

Blue Skies, What can we do to get a cure here now? Do you know?

Charlie_Roberts

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Dear Charlie,

Here's the cure Charlie, ready?

Live like you dont have als. I really think the twenty year survivors just forgot they had als and als forgot about them.

I think monterrey stem cell might possibly slow down progress. I'm excited about the emory stem cell trials that are just starting. Brainstorm theraputics should come up with something soon. Something will pop.

I get depressed after doctor's appointments too. Important to check in though, once in awhile.

Ice cream, cream in your coffee, full fat yogurt, lots of butter, eggs and bacon, hamburgers; we're upside down.