My Introduction to MS

In the early 80’s, my knee went numb. How strange. I still had control over its movement, it was strong enough to hold my weight, but it was numb. That wasn’t right. My doctor sent me to a neurologist who scheduled a test, an EMG.

I wasn’t familiar with EMG then. Even now I don't know much about it. But I knew EKG because my son was born with a hole in his heart and had EKG’s as part of his checkup routine. No problem there. I sat in the waiting room, listening to a child scream. I hadn’t realized what a trooper David was, because he never even complained, much less screamed. Then it was my turn.

(read more)

Marijuana - Yes, No, or Maybe?

Last week I read a couple of interesting, short articles on this topic, marijuana used by MSers. It has long been a controversial topic, and I have written about it before.

Medical marijuana in one form or another - pills, cannibis, hemp, mouth spray - has been a topic of discussion for years in many medical communities, including MS. A small number of MSers embrace this alternative treatment while the government stands firmly against it.

The first article highlighted a travel writer, Rick Steves, who is partnering with the ACLU to get the laws governing medical marijuana reviewed. More than 800,000 people are arrested for marijuana possession each year, and a hefty number of those use it as an alternate treatment to ease a chronic or painful condition.

Coincidentally, another article was published the same day. In it a new trial introduces a reason for second thoughts. Results of a small study indicate that marijuana when taken by MSers may cause cognitive problems. When combined with MS, marijuana may exaggerate depression and other emotional issues. In an interview with researchers last year, both Dr. Bruce Cree of University of California in San Francisco and Dr. Olajide Williams of Columbia University in NY cautioned against abusing the drug.

technorati tags: Dr.BruceCree, Dr.OlajideWilliams, marijuana, ms, multiplesclerosis, downthemspath, medicalmarijuana, msresearch, cognitivedifficultiesinms

Fingolimod and Me

Six months ago Jeri started a clinical trial for Fingolimod, a possible oral MS treatment. She started writing about the trial from the beginning. Her writing style is delightful as she carries us along on her trial journey in Fingolimod and Me..

Jeri offers us a ray of hope. Her biggest complaint about this treatment is the name. Okay, I agree Fingolimod doesn't bring to mind gorgeous visuals, but it hasn't even completed its trial yet. Maybe when it is approved by the FDA, they will let her rename the pills and plan the marketing campaign. At one time she had James Bond in mind as a spokes icon.

I know, I know, I said "when" not "if" when talking about FDA approval, but I have to do my part of positive thinking.

While you are visiting Jeri's Fingolimod and Me, be sure to go further to her new project, a gathering spot for the MS community to visit and share, My MS and Me.

Thank you, Jeri, for testing this new-fangled med. If the few side effects you have experienced so far are comparable to other testers, it sounds as if we have a winner.

technorati tags: ms, multiplesclerosis, clinicaldrugtrial, msmedication, mstreatment, downthemspath

To Park or Not To Park

It seems parking spaces are capable of generating a high level of emotion. When it comes to the subject of handicap parking, intensity increases.

Think about popular TV programs, the barometer of social rules, using parking as episode fodder.

• An episode of Coach was about the women teams coaches' remote parking versus the men teams coaches'close parking in the cold, sloppy Minnesota winters.
• Then, on Seinfeld, Georgeblocked New York City traffic for hours over a coveted space.
• The deacon on Amen (Sherman Hemsley) marked his space with a sign reading, "Don't even think about parking here."
• Curb Your Enthusiasm had Larry outraged over a handicap parker whose disability was stuttering.
• And then there was House whose conflict was between two disabled people -- cane vs. chair.

I'm sure there are more, but these get the idea across. Parking spaces have a way of agitating our blood pressure,especially when it comes to handicap parking.

I submitted a question this subject to Yahoo! Answers: If you are not disabled, should you be able to park in a handicap space for just a few minutes?

(read more)

technorati tags: downthemspath, Vicki'sMSPath, disability, disaboom, health, wheelchair, ada, Vicki, handicapparking,

Amigo "Friendly Wheels" and Me

The scooter I use to go wherever it is I go is an Amigo. When I bought my first one, Amigo Mobility had a small periodical called "Friendly Wheels" that had stories of Amigo owners.

I quite enjoyed it for several years, and I missed it when they stopped sending them. Those were the days before blogs, or at least before I knew of blogs, and I always enjoy reading about other people's adventures. Well, times are changing, and "Friendly Wheels" is being published again, but this time in an electronic format.

Jennifer Thieme is responsible for this resurrection. She asked me to write a short piece for the premier issue. I wrote about my first days with my Amigo. Sign up to receive future copies.

Jennifer's father Al actually invented the Amigo 40 years ago, starting the power operated vehicle (POV) industry. Lucky for us. Amigo Mobility International (AMI) is celebrating their 40th anniversary. Leave them a congratulatory note.

technorati tags: amigo, pov, scooter, downthemspath, friendlywheels

Let's Play . . but Make the Set Accessible

Game shows are for everyone, but work needs to be done before everyone is welcome. Mental exercise is good for everyone, fun is healthy and it feels good, so games should be available and accessible to everyone.

I know my MS may result in cognitive difficulties as well as physical limitations, so I enjoy turning my efforts into mental fitness. When I asked my doctor the best way to delay the onset of cognitive disability, he told me to do something like crossword puzzles to exercise my mind. My preferred exercise program consists of television game shows. (Read More)

technorati tags: downtheMSPath, disability, disaboom, disabled, ms, wheeler, wheelchair, ada, Vicki, jeopardy, wheeloffortune, I'vegotasecret,

Federal Activism Council

The Federal Activism Council is a group of individuals living with MS in all ways -- MSers, caregivers, healthcare, and the National MS Society. The council is focusing on unmet needs of the MS community, including federal funding, SSDI, maintenance physical therapy and more.

For more information, or to get involved, visit the National MS Society.

technorati tags: ms, multiplesclerosis, healthcare, msactivism, downthemspath

A New Technique?

The MRI has been the chosen method for diagnosing and then tracking the progress of MS. Now there may be a less expensive technique used as a marker, and it may be more detailed than the MRI in some instances. This technique may be new for MS, but it is likely you have been tested with it already. I know I have!

Neurologists from the University of Buffalo have found that optical coherence tomography (OCT) is useful in MS, especially optic neuropathy which is the first sign of MS for 20 - 25% of MSers. This is the same test that has been used for glaucoma. This test works because the retina has no myelin.

Read more about applying this procedure to MS here.

Added March 11: I found this interesting story on Being Ammey. Her diagnosis originated in an eye test.

technorati tags: ms, multiplesclerosis, glaucoma, downthemspath