Learning More about MS

WebMD is a source of information I use often. They have added a new feature I think is worth a look.

They have created Health Guides with detailed information on symptoms, treatments, and resources for more help and information. These guides are for more than 60 common diseases, beginning with allergies and headaches, and including multiple sclerosis.

The MS article begins with an Overview, probably nothing you haven't already seen if you're an old pro at this, but definitely helpful to newly diagnosed and the not yet diagnosed. Other sections are
Symptoms & Types, descriptions of primary, secondary, and tertiary symptoms as well as specific symptoms. There are discussions of exacerbations and relapses, and specific types such as Devics and Shilders diseases, finishing with advanced reading that covers children with MS;
Diagnosis & Tests, describing the tests often used and frequently asked questions;
Treatment & Care, describing MS medications and medications and care for specific symptoms;
Living & Managing covering specific problems and situations and finishing with personal stories; Support & Resources, a link to WebMD's message board and MS expert.

There are others that may be of special interest to MSers, such as Depression and Incontinence. I also read Osteoporosis.

technorati tags: downthemspath, webmd, ms, multiplesclerosis

MSRC

The Multiple Sclerosis Resource Centre is a UK charity helping MSers with unbiased information and advice. They have a message board, a chat room, and more than 3000 pages (yes, three thousand!) of all kinds of things. They are a registered charity, and the site includes opportunities to donate to MSRC.

They ask for suggestions, stories, fun and interesting items to add to the site. That must be how they have populated so many pages with fun and interesting content. Some of these stories are to be found nowhere else. For example, in the Research section, under Possible Causes is the story of a woman who noticed her MS was affected by the mobile phone mast near her home. She is organizing a group of 600 people for a study focusing on the relationship between MS and nearness to a mobile phone mast. Results were expected in 2004, and I didn't find any, so I don't know what happened.

I found this site when looking for research news and discovered the Latest MS Research News. Be sure to check out the research page that includes a long list of topics that lead to stories like the mobile phone mast.

Look around. Click the links. Take advantage of the resources.

Wing Walking Granny

Many of us have friends and family who want to help, but don't know how. We tell our mothers and sisters and husbands and friends to stick by us, and maybe understand us, and, oh yes, to help us raise funds.

Well, here's one woman who found a way. Isobel, a mother, grandmother, and great-grandmother has already raised £40,000 selling jams and crafts, but now she is trying something a little different.

In June, she will be part of the show at the Emmerdale Extravaganza -- as a wing walker!

Isobel, whose daughter is an MSer, will celebrate her 80th birthday. About a week later, she will be standing on top of the wings of a small aircraft as it soars above the crowd.

You can attend the event in Aberdeen, Scotland, donate by visiting the website, or you can take that extra step and volunteer to walk the wings yourself! Good luck.

technorati tags: Ms, multiplesclerosis, grandmotherdaredevil, Isobel, wingwalker, Scotland, emmerdaeextravaganza, msfundraising, downthemspath,

What Is Happening in Congress?

We have seen action on stem cell research before, but this time there are probably enough votes to override a veto. Stem cell research may lead to advances that benefit several diseases, including MS. It will take a long time for the research to produce usable medication, so they may as well get started. See how your senators voted here.

Congress is taking steps in the right direction for Medicare "in the home" restriction legislation. Twenty senators and almost that many congressmen have signed the Dear Colleague letter supporting MS research funding.

• Senate
  Barack Obama – IL (sponsor)
  Norm Coleman – MN (sponsor)
  Dick Durbin – IL
  John Warner – VA
  Ted Kennedy – MA
  Jim Bunning – KY
  John Kerry – MA
  Barbara Boxer – CA
  Jeff Bingaman – NM
  Amy Klobuchar – MN
  Jack Reed – RI
  Debbie Stabenow – MI
  Joe Lieberman – CT
  Sheldon Whitehouse – RI
  Bernie Sanders – VT
  Bob Casey – PA
  Daniel Akaka – HI
  Maria Cantwell – WA
  Arlen Specter – PA
  Richard Burr – NC
  Robert Menendez – NJ

  House
  Russ Carnahan – MO 3rd (sponsor)
  Rick Renzi – AZ 1st (sponsor)
  Henry Waxman – CA 30th
  Lois Capps – CA 23rd
  Allyson Schwartz – PA 13th
  Peter Roskam – IL 6th
  John Sarbanes – MD 3rd
  Jim Langevin – RI 2nd
  Patrick Kennedy – RI 1st
  Carolyn McCarthy - NY 4th
  John Conyers – MI 14th
  Todd Platts – PA 19th
  John Larson – CT 1st
  Chris Shays – CT 4th
  Collin Peterson – MN 7th
  Dennis Moore – KS 3rd
  Ed Towns – NY 10th
  Barney Frank – MA 4th
  

If your congressman or senator is not on the list, remind them they can sign anytime before April 20.

Currently being evaluated is legislation to approve biogeneric drugs so medication costs can be reduced.

technorati tags: legislationimportanttomsers, stemcellresearch, medicareinthehomerestrictions, dearcolleagueletter, msresearchfunding, biogenericdruglegislation, ms, multiplesclerosis, msadvocacy, downthemspath,

Clay's MS Days

Clay Walker is an MSer with a talent, and he puts his talent to work to benefit MS research. Look at his site about his Band Against MS to see how he is teaming with NMSS and helping with MS awareness. Look through the site to see more about Clay Walker, news of the band, band dates, and a photo album.

technorati tags: multiplesclerosis, claywalker, nmss, msawareness, bandagainstms

The MSer and her Caring Husband

Here is a touching story by a man married to an MSer Benneta. George talks tenderly about simple, everyday tasks, like going to a doctor's appointment and eating at a restaurant. It's a sweet story.

Read other personal stories on the Faces of MS.

technorati tags: ms, multiplesclerosis, familycaregiver

Fitness from a Chair

Spring -- time for everyone to get fit for summer fashions.

Well, I'm not looking to wear a bikini, but I still would like to remain fit. Transfers are not easy, but being thin and physically fit would make transferring easier, and a fit body just feels good. So what is a non-athletic wheeler to do?

I searched on the Internet for easy answers, and I found a few programs. Let' see.

Dr. Gourmet is a New Orleans internist with experience as a chef. He developed a diet including menus and recipes, based on good eating principles. He is an on-air consultant for TV's Food Network Eating Thin and he provides his eatTHISdiet online. The diet was made for cardio-vascular patients, but I found it from an MSer's question - 'What if I Can't Exercise?' He covers his rules and tells us what we CAN eat rather than just what we must avoid. My meal plan sounded scrumptious, but some of the recipes might be beyond my capabilities.

Here's an exercise program called Layered Practice, which combines principles from t'ai chi, yoga, meditation, and qi gong. Dr. Keith Jeffrey presents this in a 4-Minute Fitness video that includes exercises for sitting and standing. He has exercises for wheelers including testimonials from people who have used the program. It sounds pretty good.

The third thing I found is an ad for exercise equipment, a Theracycle. I have seen these ads for years and always thought they looked pretty neat, but I never bought one. Here are testimonials from MSers.

What is the answer? I don't know. I am a little soft around the edges, and I would like to be fit and healthy. The answer is to eat well and keep moving. I can do that.

technorati tags: wheelchairfitness, theracycle, exercisefromawheelchair, layeredpractice, taichi, yoga, mstestimonials, goodeating, nutritionfacts, ms, multiplesclerosis, downthemspath

Plain Talk and More

Are you looking for an MS forum?

In May 2006, I posted about a site called Multiple Sclerosis Sucks. The sentiment that MS sucks is popular among MSers, as evidence on The Wall shows. If you agree, you may be ready for Plain Talk: The Forum Part of MultipleSclerosisSucks.com.

Membership is not automatic; rather, Plain Talk people review every membership application to ensure everyone has a legitimate reason for belonging to this forum. This way, members feel comfortable opening up, knowing their privacy is protected. Look at Multiple Sclerosis Sucks, and if you are comfortable with the philosophy and tone, you will fit in. Read the rules, sign up, and get ready to share feelings and experiences, ask questions and give answers in a safe MS community.

Here's another forum that requires registration. OzMS is an Australian site that offers online peer support from MSers to MSers. OzMS has rules and guidelines for potential new members, and over 700 topics to explore.

Like Multiple Sclerosis Sucks, the forum is only part of this site, too. There is technical information, news feeds, blogs, a weekly chat, and the opportunity to submit articles on MS-related topics.

If you are looking for a forum, be sure to check MSSucks and OzMS.

technorati tags: ms, multiplesclerosis, msforums, privatemsforums,

A Site for Wheelers

Here's a site you want to visit if you are in a chair: Wheelchair Diffusion This is a fun site to read, with plenty of links to other sites by and about the disabled.

If you haven't quite decided if you are ready for a chair -- or which chair you might be ready for -- here's some help in considering mobility devices. He has reviews for wheelchairs and scooters and assistive devices for use throughout the house.

If you are planning a trip by air in 2008, check out the toilets you are likely to find on the Boeing 787s. Be sure to read the post, because it may not be as dreamy as they say.

Enjoy your visit.

technorati tags: ms, wheelchair, disability, accessiblebathroom, wheelchairdiffusion, downthemspath, disabilityblogs