Aug 9 1991-A Day Never to be Forgotten: HOW THIS WEBSITE CAME TO BE

(NOTE: We have hundreds of members who are unaware how this website came into reality. Please read the entire post. - Jim)

IBM! What's that? After an exhaustive three months of daily testing for one thing or another, from one kind of specialist to another, finally five physicians worked together to get an answer why I was falling constantly and losing my leg strength. The Neurologist met with my wife, son and me and told us I had IBM. The biopsy of stain and tissue was sent to three pathologists across the country and each reported IBM.

The Neurologist wrote a prescription and handed it to me. I read it, torn it into bits and stated strongly that I was allergic to Prednisone and refused to take any medications. I've never been sorry in making that decision. When the pain became so difficult in legs and pains in varying degrees (according to the intensity) two years later, I began taking various sizes of three pain medications that I am still taking until the present time. I have wonderful friendships with my Internist and Neurologist.

I asked the prognosis and was told if I lived two years, I would be in a nursing home unable to even blink my eyes or move any part of my body. Well, that was 16 years ago. (Every anniversary I call that Neurologist and let him know I am not dead yet.) Even to this day, I believe I know my body better than any physician.....and they agree with me!

The first year was the worse back then because the doctor group advised me to begin arranging for leaving the work force by no later than the end of 1991, and apply for SSD immediately. (The only time I ever talked with SSA via phone one time was to ask for the SSD application packet, completed the forms, submitted all the data and was approved on the first try - without ever speaking with SSA again to this day.)

As Comptroller of seven non-profit organizations, I had to train ten people for my work who didn't have the experience or educational background (basically I had done the same work for 40 years in that capacity), but I got it all done; clearing out my office of 17 year's collection, canceling organ concerts with my agent that were scheduled two years in advance abroad, and my son moving furniture from the town house. I could not climb the steps in the TH, getting somewhat settled in a home I had bought 75 miles SE of Dallas earlier.

I was emotionally drained, physically weak from the stress and strain, the uncertainty of the future; feeling like a blind man trying to find his way through a maze...but I did it! My son also eventually got the furniture from the lake house (then sold the property), leaving only furniture for Lucille and Rick at the townhouse. They came down to the big house every Friday evening and stayed through late Sunday evening before returning to Dallas for their work week.

I was feeling much better and accepted everything well although when I moved here I didn't know one single person. I loved to cook so every Thursday I shopped, started roasting some kind of beef, ham, etc. that evening late and finished cooking on Friday, making two kinds of home made loaves of bread, desserts and fresh vegetables, so when Lucille and Rick arrived, food was on the table. For the rest of the weekend, I had all the food, except salads, prepared, and I fixed ten containers of food for them to take to the townhouse and have dinner ready every night after work.

A year and half later, Rick died suddenly, falling dead over the steering wheel as he parked, returning from lunch. His death still hurts as he and I were always best friends and very close, always every weekend together. He had assumed all the responsibilities of our properties so he had taken much work off my shoulders. Then I had to resume all work and sell his trucks, boat-trailer, etc. It took the next two years to finally get my will rewritten as each time I marked through his name, it was reliving his death again and again.

Too, during this time I sold our plane, the 36' motor home, another boat, sold other properties, included the theater (4 manual) pipe organ, owned for 40 plus years. Lucille was still working at AT&T in Dallas.

Not wanting this to become a book, I will fast speed through the years. Additionally, my mother and sister died that I was their administrator, handling all details and expenses, leaving me the last of my family.

I began using a cane the first year, then a walker. Scooters and power chairs came and went through the years as well as a variety of vehicles to meet my needs.

In 1996 I began a support group with six people which grew to a high of 67 members, average attendance of 44. I began Myositis Support Groups in Dallas and Houston and directed them for 9 years until my strength became too weak to proceed to get the speakers, always an entertainer or well known personality at every meeting. The meetings were our "Greet'n, Eat'n. And Meet'n" time; akin to a huge family reunion with hugs, tears, very much support and comfort.

In 1999 I felt the need of having a published book - "Coping with a Myositis Disease" - real life coping stories from patients with a Myositis disease. I offered the manuscript to TMA (MAA) as a fund raiser, giving TMA (MAA) the copyright, and pay the $22,000 for printing the book. When the president of TMA (MAA) laughed at "such a silly idea to raise funds" and refused to give my friends a receipt ("but would accept the $22,000") for the publishing expenses I had raised, I withdrew my offer, returned the checks to my friends, and published the book myself. I knew the value and necessity of the patients having hope, inner-action and involvement, to let them know that each person is important.

Release date from my NYC publisher was September 6, 2000. Because I became friends with Kelly Miller, he and I had gotten the www.MyositisSupportGroup.org site built and on the Internet (funded by my son's life insurance). Amazon.com had been advertising the book for two months so on release date Amazon.com had prepaid orders for 2,000 books. The World Muscle Society in London, England reviewed the manuscript and gave rave reviews to all Neurologists throughout the world. Amazon.com gave the book a 5-star rating.

The website is the largest Myositis Support Group, rated #1 by Google, on the Internet. They sent a certificate to hang. The website has brought many hundreds and hundreds of Myositis patients from over 80 countries. We met as strangers and soon realized we became ‘family' to each other as our friendships deepened. None of us are alone anymore. The website has had over 292,000 hits with over 78,000 individual posts to the site. Seven languages are spoken (written) on the website.

Too, I published a 6 page newsletter monthly for ten years that was sent to thousands by email and snail mail. Because severe eye surgery and damage (four surgeries left my left eye blind) the newsletter had to be stopped with the May 2006 issue. I am still getting posts or calls about restarting it, but it would be far too stressful for me at this time to began that again.

I've been invited to the White House for dinner with Pres. and Mrs. Bush, VP and Mrs. Chaney; have received awards and proclamations from the State of Texas and the National Neuropathy Association and certificates from an assortment of clubs I've spoken. When I had the support groups going, I spoke three times a year to physicians at the Baylor School of Medicine of Texas in Houston; TV interviews twice on the MDA Marathons that were shown. I declined the third invitation.

Since 2003, upon returning from the Houston TMA conference where my friend Dr. Aziz Shaibani and I had helped obtained the guest speakers, late one evening I fell in my shower, doing extensive damage that stopped me from driving, totally using a power chair because my knees and legs were too weak to stand or walk at all. In 2000 and 2002, I had done extensive work to my residence but cannot use the spa room at all now. The home is comfortable for me to have all the room I shall ever need, with each room having TV, phone, and Internet wireless connections.

Needless to say, I seldom go out except to eat with friends, lite shopping, or haircuts in Dallas. Jeff, my only grandson, who now lives in Longmont , CO to attend the University of Colorado to finish his education and maintaining a full work schedule, has flown back to see me six times in the past nine months. He and I are very close and remember when he would stay several weeks every summer as a kid with just he and I at our place in Florida, teaching him how to fish in the Gulf of Mexico on a drawbridge near our condo, plus he calls once or twice each week.

The IBM now causes virtually continual pain/soreness is all my joints and muscle in all of my body. Riding to Dallas in my van makes the pain worse for two or three days. I could tell that Lucille's health was suffering because she's not strong enough to do the lifting my disability was causing her. I knew I needed help while refusing Texas Home Health Care which is truly a farce - two hours per week!

Because of my great strength and muscle loss, I have had Dan the Man and/or his son Brian to come at 7:30 AM every day to get me out of bed, dressed and lifted into my power chair, make my bed and bring in the morning papers. Every night they return to bathe/toilet me, massage my sore and aching body, gets me into bed, getting the bed raised if I want to watch TV. What a blessing these guys are in addition to our great friendship. If Dan notices that the hospital bed, trapeze, elec toilet lift, power chair needs some kind of adjustment, he falls to the floor and crawls around as he makes the repairs. In the 1.5+ years he's been helping me, he has never told me his charges and is satisfied (I hope) with the amount of his weekly check. I have the belief that bread cast upon the water returns - and having Dan is his gift to me for doing what I can to help Myositis friends around the world.

I have to take my pain medication (same prescriptions for over 12 years) now daily several times. (Every night after my bath, Dan asks if I've take my medicine (the pain medications.) Before he puts me to bed.

I am so grateful that my efforts have not been in vain in helping make the Myositis patients know they are not alone, that world-wide strangers came together to become extended family on our website and through "Coping with a Myositis Disease" book, the newsletter and the fine connection with so many, many wonderful people, including many Neurologists.

It's amazing what one person can do when they feel something HAS TO BE DONE to help Myositis patients know they are not alone, are loved and remembered.

Now, a reminder to all: I totally fund the expenses of the satellite for the Internet, related expenses, plus all updates, new programs and improvements on the site even though Kelly Miller, Webmaster, freely gives his time. He knows how the website had helped thousands and thousands and reads every post. For the few members who made a donation regularly, I appreciate the thoughtfulness and kindness, but the monthly expenses average $553.00 per month (x 12 months) has to be paid monthly.

Last year many members were generous so that the end of year donations covered the annual expenses. Please help us break even again by the end of 2007.

I've done all I can do so it is up to the members to help now. Tax exempt donations may be given, using credit cards, on the "Click to Give" link on Home Page or checks may be sent to the address on the Home Page..

Bless you all,

Jim/IBM/TX