AKjo

Oh...Ok I got the message. I will check out Barry's map then. Thanks. Yes if you ever do plan on coming out for a drive then just pm me and I will get you the details. Maybe if I am ever in Anchorage for a fun day we can meet up too. Not sure how travable your hubby is. We were thinking on going to the cermonial Iditarod start next Saturday. But we shall see. I am not sure I can do that this year.

Hello jo

Thanks for the kind words. I love this forum family and there are alot of smart folks here, huh? I do try to keep hope ever alive, and add my 2 cents worth of possitive intuitions. When we get some time, maybe we can write each other a bit about where we are...I just had a friend come and stay with me and do the tourist thing...now i am ready for a little retreat in silence and solitude. Life is good, in the moment! Blessings!

I guess Barry didn't start it, but he is apparently maintaining it now:

http://www.alsforums.com/forum/welcome-new-members-say-hello/9289-keeping-track-who-where-32.html#post157370

Tell him where you live, and you will get a pin on the map. Alaska is (thankfully) poorly represented.

We don't currently have any plans to drive out to Wasilla - especially today in the snow. But... someday?

Ok...gotta ask...who's Barry? Are you coming to Wasilla? That would be cool if we could meet up for coffee or something. My email is joycesartgallery at hotmail dot com. Email me and I can send you my phone number.

Hi Jo! Thanks for responding. Yes I have run into the 'too many characters' when typing too out a long reply. Helps me keep from babbling!
At this time I only have my gp doc Wade Erickson. I did see a neurologist called Ellenson in Anc. but all I got out of him was that he thought it might be pls but he didn't feel qualified to diagnosis it because he had never seen it before. That was in Nov. 09 and we had been trying to get to mayo clinic in minnisota since then but ended up in florida. I did go once, long time ago to washington university hospital (its not called that, I cannot recall the name at the moment) on a seperate issue. I was not impressed.

Anyway, we shall see what we see in late March at mayo. I will keep your hubby's neuro in mind as I am sure I will need to find someone with experience as things go along. Thanks for letting me know the name.
God bless,
Joyce

Thank you for your response. I guess I just needed to have a little fit. This forum is my secret for now. Family doesn't know I found it so I can say things here that I would not want to say to the ones around me. I appreciate your kindness and support.
Linda

Hi Akjo, saw you were from Alaska also and wanted to say howdie neighbor! I was wondering which neurologist you are using? Is it the Downs? I heard they were the als neuros of Ak. But I have also heard other reports that were not positive. I am in Wasilla.
God bless,
Joyce

Hi Jo, just wanted to stop by and give you a personal welcome with a hug. I hope your day goes well.
(((hug)))
Ann

I will be happy to send you a cookbook when we get it finished. I have a Hospice gal who has volunteered to help me since my typing is not always as fast as it use to be. I had a cookbook about six years ago and it sold out - this one is a bit more encompassing and will include breakfast recipes as well as bedtime snacks and some group snacks.

My partner spent 23 years in Alaska and wants to take me there to show me what he calls "the real" Alaska - so maybe I will hand deliver your copy! Wouldn't that be fun?

This is a challenge of a disease - hang tough and you will find many friends and helpers here. We may be at different stages of our ALS journey but we know what you are dealing with and care.

Dear Akjo,

Im not sure that I have ever written to you - but I get so lost with who's who here on the Forum! Friends of ours came back from a tour of Alaska a few months ago and we have spent a couple of evenings looking at the stunning sights they saw. I have a Calender they brought back: gosh, you do live in an amazing part of the world! I hope that you are well, finding your way through all this.
Regards, Roderick.

Thanks for your comment on my profile. I do feel like this disease is traveling at the speed of light for us. Plus my husband is only 35 years old. Glad to hear that your husband is processing the diagnosis. I will hope the slow progression continues for you all.

Hi, Jo- please feel free to send me a message anytime. I am not an expert, and don't have all the answers, but I'll help however I can. Sending you a friend request so you can pm(private message) me.
Marianne