Thursday, July 27, 2006
I checked the Carrollton web site and found that local individuals must deliver used needles to the Dallas Center that is shared by surrounding communities. It's a bit of a drive. They kindly provided a map and pictures so we could recognize when we arrived at the parking lot.
I want a better answer than delivering to a city-wide central hub. I found a site that tells how to place the sharps container on top of the trash the morning of the weekly pickup. Great. This is easy . . . except I have to live in Kentucky. Okay, the search continues --
Then I found a site about medical waste. What is considered medical waste and what do you do with it? My particular medical waste is needles, so what do I do? In small type, I mean very small type, this tells of a Coalition for Safe Needle Disposal, including the members, what the coalition supports and who sponsors it. Very short and very general. No solution yet.
From here I followed an EPA link to the Safe Needle place which led me to the National Service Center for Environmental Publications which led me to links where I could search for publications on any topic, and I'm sure needle disposal is among them. I had already read why it is important to dispose of needles safely, who supports safe disposal, what EPA regulations have changed, but I still do not know how to do it!
I think I'll take the needles to my doctor's office next time I go.
Tuesday, July 25, 2006
Garry keeps promising to invent a giant robot with hands that will lift me from my bed and gently place me in my chair. He guarantees no injuries and says the transfer process even includes a body massage. We have looked at hoists and trapezes which may help but they don't seem to compare to Garry's robot.
Sometimes it would just be easier to stay in bed but I don't.
The good news is that this vote, 63-37, was closer than ever before. The National MS Society continues support for expanding the potential of stem cell research in its quest to find a cure. The vote tally is available along with a map showing how each senator voted.
In my state of Texas, Kay Bailey Hutchison voted Yea and John Cornyn voted Nay. Thank you Kay.
Tuesday, July 18, 2006
To enhance the lives of people with Multiple Sclerosis, MS International Federation, Publications presents this report on “principles” to improve the Quality of Life.
• Independence and Empowerment
• Medical Care
• Continuing (Long-Term or Social) Care
• Health Promotion and Disease Prevention
• Support for Family Members
• Employment and Volunteer Activities
• Disability Benefits and Cash Assistance
• Housing and Accessibility of Buildings in the Community
Reading this publication does not take long. Each section is brief, just a paragraph or two about what should be expected. For example, MS should not inhibit anyone from receiving an education. References are provided to show how the conclusion was reached.
Download complete report or simply view it online
The Foreword by J.K. Rowlings who writes the Harry Potter books, tells of her experience with her mother’s MS. She writes more than the disease progression, it was the deterioration of the quality of life that affected her mother and therefore her family. We, that is Society, sometimes forget that just because we don’t see a new symptom doesn’t mean everything is fine. Self esteem and independence are very important in a person’s general well-being.
Benedetto Saraceno, a Director at the World Health Organization, points out that health care is moving from a disease-oriented approach to focus on patient experience and needs. He is particularly pleased with the MS International Federation’s use of the WHO Quality of Life framework.
The WHO rates quality of life considering:
Level of Independence
Multiple Sclerosis, Guide to Treatment and Management is the only complete guide to treatments, including drugs, used for MS, including alternative treatments. Links for purchase of the 6th edition are provided.
The How To section includes four booklets, each downloadable in PDF format
Monday, July 17, 2006
Edward Anthony Noles, MSer for 15 years, founded the MS Support System (MSSS) Inc. in 1992. MSSS is a non-profit organization that helps MSers in need through fundraising and donations of wheelchairs, computers and other equipment.
Read through the MSSS website introduction as it explains what it offers and how you can lend a hand if you choose, including scheduling chats and suggesting links.
Then try out the links. Here are a couple I found particularly interesting --
Check out Health Talk which offers local event programs around the country that are broadcast live over the Internet and on the phone, a free newsletter , links to articles on specific topics such as cognitive difficulties, Life with MS a blog by Trevis Gleason, and a section called Ask the Doctor where you can ask an expert or browse the answers to previously asked questions.
Look at the support program that says it is rated best by MSers MS Pathways. It includes general information, personal stories, and a free newsletter. MS Patways is sponsored by Berlex who manufactures Betaseron, and they ask you to register. However, there is plenty to see if you don't, so register if you wish, but visit the site anyway.
And then there’s Jooly’s Joint where you can meet new “webpals.”
Friday, July 14, 2006
Once again we hear the results. Nerve response is restored in mice due to stem cell research.
Stem cells are a possible source for repair or replacement strategies in MS – there is no question. The controversy is in the source of the stem cells used in the research. Currently federal policy limits the number of stem cell lines available for federally funded research.
Read The Stem Cell Story presented by the National MS Society.
Legislation is being considered that would allow stem cells from embryos slated to be discarded to be available for research. The vote may be as soon as July 18.
Wednesday, July 12, 2006
A healthy diet for everyone is healthy for MSers, too, but the MS and medications may call for special attention in some areas. Specific symptoms may call for special considerations. For example, medication may cause dry mouth that extra fluids would help. The National MS Society recommends the A-B-C approach --
Aim for fitness
Build a healthy base
See details in the NMSS brochure Food and Thought: MS and Nutrition.
And here's another diet hint -- eat more turkey!
WebMD cites a study that says tryptophan, the compound that leaves us drowsy after feasting on the Thanksgiving turkey, may also be a future MS treatment. It has already been tested on mice.
My diet takes advantage of turkey. We often replace ground beef with ground turkey in recipes and even in hamburgers -- uh, turkeyburgers. It is lean and tasty.
Monday, July 10, 2006
Bee sting therapy has been used in the United States for a long time, and it is also very popular in Scotland, the country with the highest MS incidence in the world.
And once again the mighty King Cobra raises its head. In the 70's, a doctor in Florida (featured on 60 Minutes) was dispensing PROven to thousands of MS patients when his clinic was shut down and the FDA banned the drug because it had not been tested. Nutra Pharma, a Florida company is currently developing an innovative cobra-based treatment.
Thursday, July 06, 2006
I enjoyed my visit to McFox's Pages. He has earned his Pointless Web Award, designed and awarded by McFox. He offers this award to other webmasters who want an award on their site. Pointless Web Award honors his disdain for web awards and helps to keep us informed.
He got my vote for the "World's Top Personal Multiple Sclerosis Websites" -- a great list of multiple sclerosis sites built by people affected by MS.
McFox's Pages have plenty of information related to MS: drugs, symptoms, treatments, a beginner's guide, a glossary and even more. Look around and you will find some fun facts. For example, do you know where MS is most likely to hit? I didn't know . . .
McFox has a map of the world representing the likeliness of contracting MS based on geographic location. Scotland has the highest incidence of MS per capita in the world. Even Antarctica has a higher chance than most of Africa!
Another note from McFox's Pages:
Multiple sclerosis (MS) is the most common, disabling, neurological condition, to affect young adults in the world today.
technorati tags: ms, multiplesclerosis, healthcare, medicalresearch, mswebsite
I generally refer to people who can stand and walk as uprights. Garry, my favorite upright, suggests "downright." Downright cute -- maybe, downright fascinating -- wishful thinking, downright confused about what to say when talking about people who use wheelchairs -- true.
I have seen several terms -- wheelchair community, wheelchair users, riders, sitters, rollers -- but lately I have been using wheelers, the term used by 360, an e-zine for the wheelchair community. I think it's pretty clear and I hope it is not offensive to anyone. I used to say "wheelchair bound" and then read that is not acceptable. I don't have a problem with that one, but someone does.
Today's society, at least in the U.S., is so politically-correct conscious, we are almost afraid to talk about anyone. The Canadian state department has published a guideline for terminology use. A guideline is also available from the Media Diversity Institute in London, working with vulnerable groups.
There are several terms that work, guidelines for using terms in the media, and probably some terms most of us don't care to hear. Remember, people in wheelchairs are still people.
What do you call a wheeler?
Tuesday, July 04, 2006
As control of my legs began to wither, I had hand controls put in my car. I could still drive -- a requirement for getting around in Texas. Maybe that was not really so much an Independence Day as a Continuing Independence Day. I could still get myself to work, to the grocery store, to the doctor's, to see friends and family. It was a good feeling.
Then there was another day, again because of my wilting leg strength. The day I acquired my Amigo scooter was a Renewing Independence Day.
I thought I wasn't ready for a wheelchair. I had been using a cane for balance and stability for about three years, and had recently graduated to a four-legged cane and then a walker. I could still walk (okay, with assistive devices, but I could still walk) so I didn't need a stupid wheelchair. One day I was making my way to the parking lot, slowly, ever so slowly, but I was making progress. My legs were tired, my arms were tired, but I kept going. A young woman stopped me, said she thought she could help me, and gave me her business card for Amigo Mobility. I made it to the car. I did NOT need a wheelchair.
Then one day I was in Wal-Mart, struggling with the walker, and I actually thought I was not going to make it out of the store. So when I finally did make it home, I called Amigo. When I took my first scooter walk (or roll), I felt the wind in my hair. I did not struggle, I was not exhausted, I was moving and actually getting somewhere.
Why hadn't I done this earlier? I had re-gained my freedom of movement. Independence Day.
Sunday, July 02, 2006
Most current treatments are for relapsing/remitting MS. My MS is secondary progressive, so I was particularly interested in BioMS' clinical trial in Canada and Europe. The trial involves a synthetic peptide administered intravenously every six months for two years with a goal of slowing the progression.
I received notice of this trial in an email from MSFYI in their regular research update. Coincidentally, I received another email from Esperanza Research Foundation about a similar peptide product. I am not familiar with this company, but the web site features Power Point presentations including testimonials from people who have experienced the treatment.
Notice that BioMS describes its technologies as "novel." This is interesting and definitely worth a visit.
Saturday, July 01, 2006
Rebeka was just 20 when it hit her. She was embarrassed by her “drunken-like” gait and lack of bladder control. She had – and still has – a love life, a caring family, and friends. How lucky. It’s embarrassing to tell her friends she no longer works – she’s so young, why won’t she work? It’s awkward to have to plan ahead and take naps. It is not fair.
But she has not given up. She is collecting MSers’ stories for a book that will be useful to other newly diagnosed MSers and those who love them and don’t know what to expect or how to help. This is not a hollow dream. She has the backing of her local (Iowa/Dakota) NMSS chapter.
She has been attacked by the MS monster and she wants to learn about the disease and how it affects people’s daily lives. And she wants to share what she learns with others who have been attacked.
Go to Rebeka’s web site, read her story, and submit your story to her. Share your experience and give some hope to other newly diagnosed MSers.