Saturday, August 30, 2008

Sharing the Caring

We don't understand each other. There are so many things caregivers don't really understand about the very people they are caring for. To be fair, the cared for do not understand many things about their carers either.

When I used a manual wheelchair my mother would push me out of the way, facing toward the wall. I talked to an actor who played a woman in a wheelchair. She told me people on the set often placed her facing the wall, too. What was intended to be helpful was actually seen as thoughtless. Why would we want to sit facing the wall? It felt as if we were just being put aside. Even the actor who was fully capable of walking was pushed aside because she was in a chair.

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Thursday, August 28, 2008

MS and Vision

If you have MS, the chances are that you experience some type of vision problem, too. Well, tonight there is a webcast that might answer some questions, or at least shed some light on some vision difficulties.

Healthtalk is sponsoring a webcast called
Symptoms of MS: Recognizing and Treating Optic Neuritis tonight at 8:30 EDT. Experts will share how to identify optic neuritis and how to treat it. Sign up now. or go directly to the webcast.

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Wednesday, August 27, 2008

Caring Game

Caregivers. You know one, or you are one, or you have one. What do they mean to us? provides guidance and gives advice especially for people caring for their elderly or ailing parents. Missy has started a game she calls "The ABC's of care giving." It's easy. Here are her rules:
I will start out with the letter "A" and choose a word that describes something that I associate with care giving. The next person who posts will choose a word starting with "B", the next "C", and so on. There are very few rules in this game. Just do your very best to stay away from anything obscene or offensive. Other than that, go nuts! It can be happy, sad, funny, honest, thoughtful, kind, snarky...whatever. This is our game!
So far there are five entries -
  • A - Aging
  • B - Brushing Teeth
  • C - Crisis Avoidance
  • D - Disability
  • E - Energizing
Read the explanations and stories that go with these alphabetic care giving words. Vote if you find a story helpful. Then pick a word or phrase for the next letter and add a thought of your own. Check it out.

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Sunday, August 24, 2008

Scooter Ban?

It is not discrimination; rather, it is protecting us. Or so they say . .

A partial ban on scooters and electric wheelchairs on the Metro system in the UK is currently in place due to four incidents where a scooter driver crashed or fell on the tracks.

However, as a spokesperson for the MS Society pointed out, drinking riders have caused many problems on the Metro including falling on the tracks, and no ban against riding drunk is being considered. It sounds like blatant disability discrimination to them!

A complete ban is being considered, and the decision is to be announced Tuesday.

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Saturday, August 23, 2008

A Population Tsunami is Coming!

With the aging of America also comes a redistribution of population segments. Of particular interest is the current disability minority that is moving toward a new majority.

Here is a data visualization of the U.S. population over 50 years of age from 2010 to 2050. Click on the chart to read notes explaining the boxes that mark interesting age group trends.
U.S. Population by Ages 50+ (2010-2050)
Looking at U.S. Census population forecasts from 2004, we see an increase of 100% to 300% to all ages over 70 in the years between 2010 and 2035. The Baby Boomers will be introducing the very beginning of this glacial increase in age distribution. It shows the over-80 year old group almost doubling, the 90s quadrupling, and population reaching 100 exceeding a 900% increase by 2050. Public data estimates show that in some U.S. states, there will be more than 20% of the population with disabilities.

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Wednesday, August 20, 2008

Marijuana Updates

There are some marijuana research results that might be interesting to MSers. Check it out:

  • The L.A. Times reported research investigating marijuana effects on pain in several conditions and diseases including MS. In one study, nearly half experienced improvement in muscle spasms. Another study showed no objective measures in arm tremors although patients reported feeling improvement.
  • One study evaluated the "prevalence of cannabis use, related factors, and degree of satisfaction in Spanish patients with multiple sclerosis." Clinical improvement was reported for a subset [about half] of patients, but most of them were "highly motivated for a future medically controlled use."
  • Disabled Politico, a blog I read, posted about a "new model" that provides benefits without affecting the brain and causing psychotropic effects.

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Monday, August 18, 2008

Are You Managing?

WebMD, a health source I rely on, asks how well you are handling your MS. This is not a time to say "Just fine, thanks." They have a short and quick survey to find the answer. Try it. I was surprised at my scores.

It looks as if Pfizer had a hand in developing the survey because Novatrone was mentioned in one of my responses. However, this is not a sales pitch, nor does the information seem slanted. It is simple, basic information with general responses.

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The Pollyanna Attitude

When you look for the bad in mankind expecting to find it,
you surely will.
~ Abraham Lincoln
Remember Pollyanna? Pollyanna's father gave her a brooch inscribed with Lincoln's quote. It became her life philosophy, but she framed it in a positive light, looking for something to be glad about in every situation. It started when they were very poor and relied on charity. One Christmas, Pollyanna got crutches, and she was disappointed and upset. Her father said she could be glad because it was a reminder that she did not need them! "The Glad Game" became part of her life. It sounds like a wonderful attitude to me.

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Saturday, August 09, 2008

It's Not About the Door

Note: A couple of weeks ago I wrote a post on Disaboom about a question I saw on Yahoo!Answers: Why Are Disabled People So Mean? Now usually, a post I write attracts between 0 an 6 comments. I try to respond to everybody, and I have found some other good blogs to read from the commenters. This post generated so many comments I was overwhelmed - 99. Yes, 99! The comments actually became a forum focused not only on mean people, but also on people opening doors for those of us with canes or in wheelchairs. That comment string led to this post. --

It's Not About the Door

Apparently doors are a hot button in the disability world. This story was mentioned in a previous post:
A young man explains that he tried to help a disabled woman by opening the door and was greeted with a dirty look, like maybe he was going to rob her, and certainly with no thanks. He said that had happened before, so he was not going to help any more disabled people.

There were so many comments that the subject turned into a forum. There must be a reason for that. My interest was piqued by the question and the answers, too. Apparently, it was interesting to a bunch of us, with different perspectives and attitudes. Many people shared their own stories, things that happened, what they thought, what they would have done, reactions to other comments. They were enlightening. All of the comments together reflected the make up of our diverse community touched by disability. Comments reflected anger, rudeness, appreciation, rage, disappointment, acceptance, frustration, understanding, a sense of humor and sometimes just explanations. Julianne said, "Within this single conversation, lots of us have commented about how we personally believe we should behave, or what is comfortable for us. Our ideas are very different, and all valid."

Many comments focused on help opening a door.

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Thursday, August 07, 2008

NMSS Supported Research

The National Multiple Sclerosis Society (NMSS) supports research. We all know that, but do you know what kind?

Here is a list of current research projects funded by NMSS. The projects are categorized in 16 topic areas. The person responsible, location, amount of funding and area is given for each project. Then a short description of the research objective defines the project.

This list gives an idea of the breadth of research supported by NMSS. Are you interested in epidemiology or rehabilitation? See what current projects are in those categories. It's quite interesting.

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Tuesday, August 05, 2008

Peer Review Research Awards

This year for the first time MS has been named as a topic area eligible for research funding throught the Peer Reviewed Medical Research Program (PRMRP).

The PRMRP is administered by the Department of Defense (DoD) which reviews several topic areas that compete to receive funds from the $50M research budget. Proposals are reviewed and selected based on scientific merit and programmatic comparisons to other proposals in the same category.

The DoD selected 10 volunteers to serve on the panel in September to review 142 submitted proposals. Read about funding
opportunities for fiscal year 2008. Scroll down to the table to see the award mechanism.

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Sunday, August 03, 2008

My New Plan Won't Let It Have Me

I have MS, it doesn't have me.

What a great mantra for me.

I have ____, it doesn't have me. Now you fill in the blank with whatever disease or condition interferes with you.

With progressive MS and the havoc of daily life, there is not a moment when I am not aware of my MS.MS has a definite hold on me. I cannot deny it, and it is not going away. However, I refuse to give in and let MS have me.

It is time for a new life plan. I will make it simple.

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