My legs and hands are going quickly but everything else is percolating just fine! Yay for your son's visit! I envy you your trip to DC. Have a safe trip and make some noise for us! Be safe Dear One!
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Hi Sue! Just thinking of you and hoping you're feeling good! So, how are you Toots?
Was great to see your post on Happiness Now....have a wonderful time on your trip! Will miss you but knowing you are seeing the wonders of nature makes me very happy. ((hugs))
Dear Sue
We are missing you. How are you managing without working? Well I am sure you are working hard at home. Do let us know if you are ok. We are getting a bit worried.
Aly
Hi Sue, just dropping by to say hi and see what you are up to....havent seen your post in a while. Hope all is going ok for you!
Ok, Sue, I've been wondering how you've been doing, and you haven't been here for a while. Are you on the Dex trial still? I had my 2 month checkup last Thursday. I'm getting WORRIED...
Hi Sue,
Just got back from Boston, and boy, am I pooped! It took over 1 1/2 hours to get in there, and we left after what is usually rush hour. Only took a half hour to get out and we stopped for lunch on the way home in addition.
So I got the meds... what do yours look like? I'm sure they all look the same, but my capsules are white, say KNOPP on one side and 15075P on the other... hopefully the "P" doesn't stand for placebo!
How are you feeling? Do you also see Amanda at Mass General? Did you contact Compassionate Care ALS and talk to either Ron Hoffman (the founder), or Luke, his helper? Let me know if you want their number...
Hot out today, and more storms are coming...
Thanks for sharing regarding dexpramipexole.
Randy
Hello, Sue! It is a pleasure to befriend you. Thanks for your invite.
Hi Sue! Hope you're having a good day!
Hi Sue,
Way back when, my husband and I had a camp in Naples... I called it my "crappy little crailer" as started life off as a trailer, and had rooms added on front and back. Still had the trailer kitchen and bath, yuck! Sold it a few years ago, couldn't afford to keep it. But it was fun having it for those few years.
My doctor at UMass also is at Mass General, its Dr. David Chad. Funny thing is, he lives in my little town, which is about halfway between Boston and Worcester. I need to email him to see who I should talk to about the new medicine that will be in phase 3 clinical trials starting in April. I think I should qualify, looks like you have to have been diagnosed within 2 years of the start date.
Let me know the next time you're in Boston, and if your schedule permits... it would be kinda cool to compare notes in person.
I wrote more but this forum didn't allow that many words! Oh well...
Helen
Hi Sue,
I noticed on your post that you see a neuro at Mass General. I was going to a neuro at Beth Israel (loved them, but easier to go to the clinic at UMass Worcester). My new doc at the ALS Clinic at UMass also works out of Mass General, and I'm wondering if its possible that its the same Dr?
Where in Maine do you live? We should try to get together some time before we get worse!!
Helen -
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