Scleroderma Information » Scleroderma » Atlanta!
Question:
To all of you in Atlanta: Hope you are having a wonderful time! Please remember those of us who aren’t =(
Response:
alt.support.scleroderma is now at the USF conference, but it’s sleepy and needs to rest up for tomorrow. More later… Amie —————– There’s no waiting worth the misery And there’s no wanting worth the tears… —————–
Response:
It’s Thursday, and while the wonderful people who give of their own time to do support take classes on establishing support groups, etc., those of us just here to kvetch and eat hotel food are trying to find someplace WARM!!! Thunderstorms that have passed through the last few days have brought the temps down, but, of course, the hotel complex is still cranking out cold air. Lots of blue hands at lunch. The workshop sessions on Fri. will cover a great variety of topics, from gastrointenstinal involvement to wound care to hand exercises and occ. therapy. I’ll try to let you know of any interesting tidbits I hear from there. Saturday will also be interesting, with presentations from 7 doctors about specific issues. I’m really eager for the presentation on Raynaud’s Diagnosis and Treatment, and I hope we can convince the organizers to move the session to the sauna in the exercise room. Please feel free to email me if you’d like to know the actual temperature in various rooms of the hotel, and how many decaf lattes it takes for the blood to flow again. For now, I’m off to go buy a whole new wardrobe since I packed for the deep south in July and it feels like Ohio in January. More later ;-) Amie —————– There’s no waiting worth the misery And there’s no wanting worth the tears… —————–
Response:
I just realized I’ll be on the road back home tomorrow and won’t have the chance to say anything about Saturday’s session, but I’m sure the important stuff will get talked about here soon, and it’s about time I shut up and let someone else get a word in edgewise anyway! The class on gastro-intestinal problems mostly covered the things we all already know about and try to do to help control reflux – propping up the head of the bed, no food 3 hours before sleeping, avoid foods that cause problems like citrus juices, tomato, peppermint, chocolate, as well as taking the right drugs. I did appreciate Dr. Yanda’s nod to "everthing in moderation" when it came to diet modification. I guess I can still have a few Oreos, just not the whole bag. I was surprised by a few things, such as drugs that can make things worse. I’ve known about calcium channel blockers causing a problem as far back as the first time I read Ed Harris’s FAQ, but I didn’t know that nitroglycerine can, too. I use nitro paste in the winter to treat Raynaud’s episodes. It was also interesting to find out that tetracycline and Phosamax can affect the esophagus. The hand exercise and occupational therapy class reinforced another old adage – "Use it or lose it." It stressed exercise and strengthening, and lots of motivation. It’s pretty easy to have someone show you a set of exercises, or to read a book about them, but getting in the habit of doing them every day and doing them right could be tough! We talked about adaptive equipment, too, both homemade and from a manufacturer. The workshop leader, Heather, shared a catalog with us and here’s their URL: http://www.easy-living.com/ I haven’t visited it yet so I can’t vouch for it. Opinions of others appreciated here. The last workshop I attended was on nutrition and exercise, and the presenter, Robyn Pope, was great. You could tell it helped that her mom has SD – she had a very personal and real understanding of the issues. She gave lots of information and motivation, most boiling down to "Eat right and exercise regularly." I realize most of our mothers could have said that much, but she also pointed out things mom didn’t, like being careful of food and medication interactions and making sure that others in your family know the Heimlich maneuver if you have swallowing problems. (BTW, she had a book that lists food and med interactions, is updated yearly, and is available in normal bookstores, just called Food and Medication Interactions. First aid for choking is taught at the Red Cross.) Great conference, USF. Much information and many interesting people. Amie —————– There’s no waiting worth the misery And there’s no wanting worth the tears… —————–
Response:
I am ONLY a member of the USF (I’m also a member of the SF) and, though I will try to be unbiased, any opinion I express here is purely my own (as if you didn’t know that by now anyway…) I’m just trying to let those of you who were unable to attend know some of the things happening here. ‘Nuff said. The Friday morning session presented by the Board of the USF spoke mostly to the efforts of the board in their direction for the upcoming year, and some general maintenance always called for at these meetings. Things got a bit more interesting as the floor was opened for questions. They ranged from questions about the direction and focus of research funded not only by the USF but the SF and the SRF to government and political action to publicity. This board is being confronted here with a very energetic, creative, and determined contingency of patients. Ronni Shulman (RSM…@aol.com) gave a great report about the state of scleroderma on the net and I found myself slowly coming to the realization that the net-connected SD people are sort of their own "chapter." We’ve broken down the barriers of geography with our computing and are as connected as those who meet face-to-face in the same city. Dr. Fred Wigley gave a good presentation about research focus and the specific work he is doing. He spoke well to our extremely varied group, not being too techincal but also not being too elementary! I’m presuming that the USF will have either trascripts of his talk or video (or both) available and I’d highly recommend it to add to your understanding of the recent info about his research findings and the SD/ Raynaud’s connection. I have to mention the shopping opportunities, don’t I? There were great pins, badges, coffee mugs, T-shirts, gloves and sweatshirts (how appropriate!) and publications available. I’m pleased to now have a copy of Mark Flapan’s book Perspective on Living with Scleroderma, published by the Scleroderma Federation. I’ll let you know how it is as soon as I can, or you can order one at 1-800-422-1113 and post your book report here first! The afternoon session looks like it will have some great practical information. I’m going to classes on gastrointestinal involvement, hand exercises and occ. therapy, and good nutrition. I hope I can get some interesting things from them to post here. Amie —————– There’s no waiting worth the misery And there’s no wanting worth the tears… —————–
no comment untill now