Betty, I know I asked everyone for their ideas, but since they are yours, will you please ask them, maybe one per day or when you see that the mails are dwindling? I have a few ideas of my own and will ask them occasionally. I don't want to become the moderator for the group. My initial intention was to get the group started emailing again. Love you, Jude In a message dated 1/25/2013 12:32:12 A.M. Eastern Standard Time, [email protected] writes:
Hi Jude, Because of my compulsion to make lists, quite a while back I began keeping information folks shared in their posts so I could look back if I had questions - or just plain couldn't remember. I've attached my spreadsheet because I thought it might help you in starting some topics of conversation or passing on helpful info/lists/charts for new TM'ers. The first page is a list of TM'ers - their email address, name, spouse (or parent of child with TM), age (if given - but I haven't updated them as each year has passed), blood type (there was a series of posts at one time about whether certain blood types were more prone to TM, but not a lot of responses), birthday, city/state/country, date diagnosed, which area of spine affected, medications used and dosage, and occupation and/or website address. You'll notice it's alphabetic by the person's e-mail address and there is some color-coding... pink background = those now deceased (the ones at the bottom of the page - I never knew their e-mail address, only their names); grey background = those who've unsubscribed or been removed. The second page is a list of doctors TM'ers have received care from or recommended, which hospitals they work out of & who recommended them. There are also links to the Johns Hopkins Neurology & Neurosurgery website, Dr. Greenberg's website & a website to locate a neurosurgeon in your state and see their ratings & contact information. The third page is a list of medications TM'ers have indicated they have taken, what dosage (if given), what procedure they had that it was indicated for and what additional diagnosis they were given. The fourth page is a list of supplements TM'ers take besides their pain and/or nerve medication. The last page is a chart of blood types, including the percentage of the population that has that blood type. As for topics for discussion... I was thinking you might consider some of the following: * Exercises - what do TM'ers do for exercise? Go to a gym? YMCA? Therapy? At-home program? And what specific exercises help specific areas of the body affected by TM. * Massage - does it help? Can your body handle it? (personally, I don't like anyone rubbing my body 'cause it sends weird sensations through me). * Utensils / Tools / Gadgets found to be helpful - and where to get them. * Traveling. What hotels cater well to the disabled, tips for flying and/or driving, etc. * Clothing - what works best for you? Cotton / Polyester / Wool / Silk? Can you still wear the same clothing you wore before TM? Do synthetics make your skin crawl? Do you have to wear diabetic socks because regular ones are too tight? * Shoes - what have you found that works best for your balance issues? I hope some of this information helps. It's great to see so many coming back to this group. Hugs to you, my friend! Betty Clark P.S. - my address is: 2642 Wild Bill Way Santa Rosa, CA 95407 phone: 707-575-9501
