Larry, I'm not sure why but I'm getting duplicate messages from you and Jude. It has also occured with several others on the list. Maybe because of individual names plus the tmic-list? yes, if you send one to me & the list, you will get both.
Is Allen in this group? Allen is not in the group regularly, he does read the archives, I think. I do think we need a spoke person. I think it would be great to get him and Cody Unser together as spokes persons in some manner. Allen knows alot of celebrities in Hollywood. He has written other books and has the needed conections in that world. We are such an "elite" group and I sometimes I get very upset explaining exactly what is wrong with me. If I'm sitting or standing, I appear to be very "normal" it's only when I move, walk or have spasms that gives my condition away.Heck, me and my family have had all kinds of medical conditions but not once in 57 years did I hear of Transverse Myelitis or that it could be associated with infections or immune disease until Jan. 10, 2006 when I was diagnosed. I had heard of MS, Lupus, and colitis but never that any of these could or would be associated with TM. When I was diagnosed in 1974 someone told me one in three million are DX with TM, today one in 1.67million are Dx. It's not that there are more it's just better diagnosis tools like MRI's and such. I felt so alone until I found this group 24 years into my experience.Candy K.I like your idea of approaching Allen to write a follow-up book. I haven't read the book yet. I requested that my library order it - we'll see if they can get it.
I'm a little disappointed to hear that he doesn't deal with all the issues. Perhaps he DOESN'T live alone, and so doesn't have to face some of the issues that some of us who live alone, do. (I don't know.) He is married but I believe the stress has been difficult for their relationship. I believe he talks some of this in the book. If he's able to write and sell a book, that certainly must help him at least a little, to deal with financial challenges. I'm happy for him for that! But I'm sure he has many other problems that I don't have, since I'm at least ambulatory. For what I've read, I have been able to relate very well his experience. I've always tried to look for the simularities in books like this. And I think Allen has done a good job relating his experience. Which is why the suggestions to interview others, and include some of the various things different people have to deal with, is a good idea.
I'm able to walk - increasingly better all the time. But I still deal with excessive fatigue, etc, that is still making me too dysfunctional on too many days, to be able to go back to work yet. I've been taking Provigal for fatigue for a few months now, it helps some but my copay on my insurance it $50.00 just for that, same with my Cymbalta that I take. Add to that my wifes medications and the others i take add up to more than I can afford each month. I have to alot myself what I can do and go on from there. I do get some help from my doctor with samples when he has them but that is not often. And it's getting close to 2 years now. Living alone and having no income is a pretty major issue! Are you getting state assistance? You might be eligible for help with a few things around the house. That's to say nothing of taking care of everything that needs to be done, physically.
Please share with us if you come up with a 'group suggestion' - like where we might be able to email him, etc.You can email him at his website, allenrucker.com I think.
Sally
----- Original Message -----From: Larry ThroneSent: 3/18/2007 10:31:07 AMSubject: RE: [TMIC] Allen Rucker in OKC, OKI think Allen just wanted to tell part of his story, not the whole thing at the time of writing the book. When he spoke at the book store he did breach much more of other aspects of being disabled. Who knows, If we all respond to him he might consider what you have suggested. I think that would be a great idea.
Larry Throne, MSW
From: "Candis Kalley" <[EMAIL PROTECTED]>
Reply-To: [EMAIL PROTECTED]
To: "Jan Hargrove" <[EMAIL PROTECTED]>, "Larry Throne" <[EMAIL PROTECTED]>, "tmic-list" <[email protected]>
Subject: RE: [TMIC] Allen Rucker in OKC, OK
Date: Sun, 18 Mar 2007 10:22:24 -0400
I read Allen Rucker's book "The Best Seat in the House". It was OK as far as I was concerned but did not really deal with real TM issues such as not being able to work because of physical limitations most of us face. Allen was able to continue with work even in a wheel chair but I can't work due to all four limbs affected plus the issue of no stamia - needing to sleep every few hours, falling when least expected, needing to fix things around the house but need to spend money to get it done, finding ways to do simple things.I believe that if Allen is really interested in spreading the word about TM, then let him write another book in which he actually interviews some of us that also have TM and details the challanges that we face just to do daily living - especially some of us that do not have a spouse or family member available to help 24/7.Just my thoughts but I was disappointed in the book because as far as I'm concerned it just touched on the physcial and mental challenges we face.Candy K.----- Original Message -----From: Jan HargroveSent: 3/18/2007 10:01:27 AMSubject: [TMIC] Allen Rucker in OKC, OKLarry,Sorry I didn't get to OKC when Allen Rucker was there so we could all meet face to face............but, I was able to order his book online at Barnes and Noble..........sofar I've not had time to get into it, but in this week's PEOPLE magazine one persontold that this was the book they were currently reading and had high praise for it!!Look's like we're in for a beautiful day! I just hope they're right as they are predictingmucho rain this week, which we DEFINITELY NEED!!! up here........Later, janhAllen Rucker, the gentleman who the book about his own bout with TM called "The Best Seat In The House: How I Woke Up One Tuesday and Was Paralyzed For Life." He is touring the country promoting the book and will be in Oklahoma City on Saturday, March 3rd (3 pm) at a bookstore called Full Circle. I am planning on going up there to meet him and would like to invite any of you who might be in the area and can make it to come on up. I hope to be there shortly after 3:00pm. Hope to see you there. The store is called FULL CIRCLE Bookstore, 50 Penn Square, OKC, The store number is 405-842-1840.Larry in Oklahoma who could bring an extra puppy if someone wanted me too. I only have a few left!
Larry Throne, MSW
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