TedH5

Dear Ted, I went to the link. There is nothing (?) in Canada, nor in Washington, Oregon or California. Nothing on the west coast. And where there are trials in the States it says you have to live close to the center. How long are these trials???

Ted, yes, I believe my sister is in denial. And very angry. I get it, I totally get it. But, do more newly diagnosed patients get first 'dibs' at the clinical trials? Does age matter? What trial were you a part of? Do you know what is happening with stem cell treatment or NP001?

Ted, I don't know if this is important but my sister is 58 and has always lived a very healthy and active life. She has no other health problems.

Ted, I understand anger and denial. What I am worried about is the fact she has had symptoms (just those she can identify) for the past 8 months. She is refusing a second opinion and says she will not go to the ALS Clinic in Vancouver. My question is this - I believe U.B.C. in Vancouver is running clinical trials for at least dexpramipexole. I know NP001 and stem cell is being studied. Beach Bum advised me to write you because you've been in a trial. Do they want people who have just been recently diagnosed? Does it matter? If my sister progresses slowly would that hurt her chances of being accepted into a clinical trial? Thank you for any info you can give me!!!!!!

Ted, my sister was diagnosed two weeks ago. She had the best neurologist in Victoria who followed all protocols. He wants her to go to the ALS Clinic in Vancouver. Yesterday, she registered on your site and went to the "Do I Have ALS". Called me this morning and said she was very angry with her neurologist for diagnosing her with ALS. She doesn't understand that a clean MRI is a bad thing. She has had symptoms for the past 8 months. Started with a weak right hand that we all thought may be carpal tunnel syndrome. After seeing the neurologist for 2 hours, having an EMG and an MRI plus all the requisite blood tests, he diagnosed her with ALS. She is furious now with him because all she got from the site was that ALS is very hard to diagnosis and is very rare.

Hey Ted, we are doing ok, you know every dayit seems like there is a little change, some days better than others.. I sure hope you are doing good! We go to Emory next friday, kinda dread it, I know they will tell us of the changes, I hope his breathing has not dropped too much. You look really good and strong in your pictures

I haven't really given up the cigars, still have the odd one, same as you, with friends.
I do plan on going back to Cuba, maybe in April or May.


Talk soon.
Cheers.

Ted,
Too bad I didn't connect with you in the summer, I gave away two humidors full of Cuban cigars I didn't want to go to waste.
We've been to Cuba 5 times, and it's a shame Americans aren't able to go, the people are great, the beaches are fine, and the cigars are smooth!

Stay strong, love your life and may the lord bless you and your family with a cure.
Cheers!

Hi Ted,
I am doing good,had great holiday,wish I could eat,everything looked so good,miss food but I had my 5 cans of Osmolite,no turkey flavor.How you doing,pray everything is going well for you and family-------------------------Ken

Ted,
You are the first person I have met my age (I just turned 40 the end of March) and seems like you have a great loving family like I do.
I look forward to our friendship and your advice during all this.
I noticed one of your interest is cooking, I'll try to update my profile as I get used to this site, but I too love to cook.
Cheers,
Casey

Hi Ted
Sorry I am so slow to get back to you. Am still learning the ropes with chat groups.
My email is [email protected]. If you have some time would appreciate hearing from you.
Pat

Yes, it's finally arrived. 50! Im not sure how I feel about that, but its been a lovely day so far. The builders finally got to the point of knocking out a narrow window to put in a much wider one with a great view out onto the hills; Ive been waiting for a while for this moment with anticipation so Im keen to get in there for a look when they pack up. Thanks for dropping in Ted, I have been a bit quiet I'm afraid, sort of lost my bearings I guess.
God be with you Ted, hope life is rich for you.

Hey Ted, My name is Boris, I was hoping to be able to exchange a few messages/emails with you. I am new to this site so I do not know how to private message, Thanks!

Ted, hope things are still going well after the trial!!! Happy Holidays! I've already decorated for Christmas to surprise my husband when he returns from FLA.

Hey Ted,
Nicely done on the speech!
I liked the iron horse parallel