Life with MS is often an uphill journey.... This page isn't about my troubles, complaints or frustrations as much as an info page for those of you who really don't know much about MS. There are several links on this page that will point you in the direction of higher learning, if you want to know more.
Here is a brave group of wonderful souls from Kaiser Hospital - Fresno who braved hills, dales, wind, sun, heat and sore backs, legs and behinds on a 150 mile BIKE 4 MS ride... They gave up their Mother's Day Weekend to help those of us affected by MS. The MS 150 Crusin' to the Coast was a 150 mile scenic ride to the awesome and inspiring Pacific Ocean from the Central Valley of California. The tour traveled on quiet rural roads through the heartland of California, then up and over the coastal range to the ocean in Monterey. The Cruisin' route offered the cyclists beautiful rolling hills, full of deer birds and lots of other wildlife. MY (Judy's) boss, Bill, is second on the right and my Medical Director for the Sleep Lab at Kaiser (Dr Yosifov) is the shortest, in the middle of the group. I know Bill raised over $500 - and some of that money came form my friends, family and PUPPY FAMILIES. So THANKS EVERYONE! I will post here the total for the Kaiser Team once we know.
http://www.nationalmssociety.org/ This is the site where you can find info on MS, and on the bike tours scheduled for this year.
YOU CAN HELP TOO! The Fastest Route to a Cure for MS Goes Through a Town Near You
(from the website):
Thousands of miles of road, all over the country, await our enthusiastic 2006 MS Bike Tour participants. Find a ride near you or plan a series of cycling events all summer long—there are about 100 tours covering 48 states to choose from. Last year 100,000 participants raised $60 million for the fight against MS. The 2006 MS Bike Tour is your chance to do something big: get on the road to a cure!
Multiple Sclerosis (MS) is a chronic disease of the central nervous system (brain and spinal cord).
MS interferes with the brain's ability to control such functions as seeing, walking and talking.
It's called Multiple, because many scattered areas of the brain and spinal cord are affected.
It's called Sclerosis, because the disease involves "sclerosed" or scarred tissue in damaged areas of the brain and spinal cord.
The central nervous system acts like a switchboard, sending electrical messages along the nerves to various parts of the body. These messages control all our conscious and unconscious movements.
Most healthy nerve fibres are covered by a fatty substance called myelin, which protects the nerves and aids the flow of messages. (Think plastic coating over electrical cords).
In MS, the myelin breaks down and is replaced by sclera (scar tissue). This distorts or even blocks the flow of messages. ("Short circuits" the electrical impulses, just as an electrical wire would if the protective plastic coating is damaged or missing).
Body functions become uncontrolled because messages don't get through correctly. Problems with sensation, movement, vision, and sometimes thinking result. Scarring can occur anywhere in the brain or spinal cord, which explains the wide-ranging symptoms. These may include colorblindness, blindness in one eye, fatigue, balance problems, loss of bladder control, muscle spasms, paralysis, extreme sensitivity to heat, numbness, and mild attention deficits or memory loss. Lucky FOR ME (Judy) I haven't had any really bad vision problems yet- and I'm not colorblind. But, um, the rest of the list.... well........... 8-( Just remember, if you think I forgot you, I probably DID--- but NOT on purpose! ;-)
Based on the severity and the come and go pattern of the symptoms, MS is grouped into four different categories.
1) Benign (Least Severe):
This is the least severe type of MS. It includes a few, mild early attacks and complete clearing of symptoms. There is minimal or no disability to a person with Benign MS. Approximately 20% of diagnosed cases are Benign.
2) Relapsing/Remitting (Somewhat Severe):
This type of MS means a person experiences more frequent, early attacks and less complete clearing, but shows long periods of stability. Some degree of disability is usually present. Approximately 25% of diagnosed cases fall into this category.
3) Secondary Chronic Progressive (Moderate to Seriously Severe):
More attacks, more often and fewer and less complete remissions after the attack. The disease increases in effect and is greater than seen in the previous forms. The MS may continue to worsen for many years and then level off with moderate to severe disability. Nearly 40% of all diagnosed cases are secondary chronic progressive. (This is the one I have...)
4) Primary Progressive (Extremely Severe):
The is the most severe form of multiple sclerosis. The onset is quite severe and the course is slowly progressive without any clearing of symptoms. This is also the least common form of MS with only 15% of diagnosed cases.
Common Symptoms of MS include:A "pins and needles" prickling sensation most often in your toes or fingers - like your foot or hand fell asleep. Numbness - again most often in your toes or fingers.(Mine is a whole leg or even side). Problems with speech and swallowing. Eye trouble - seeing double, blurry vision, or uncontrolled eye movements Slight memory problems. Tremors in your arms, wrists, and hands - particularly when you try to pick something up or write. Loss of balance and poor coordination. Gait difficulties. Extreme weakness. Abnormal fatigue. Partial or complete paralysis. Bowel and bladder dysfunction. Source: MS Tutorial - www-medlib.med.utah.edu/kw/ms)
It's not because I'm lazy--- although I would LOVE to go take a nap right now. ANd it's not because I want to take my dog(s) into Starbucks, the mall or Wal*Mart. Yes. I can still walk-- but I walk like a drunk on New Year's. I would never be able to pass the sobriety test! I use a chair for several reasons.
First, it helps conserve what energy the 20 shots of espresso a day give me (thanks Starbucks).
Second, I get tired of losing my balance and falling-- makes me feel even more stupid than usual...
Third, it helps me keep my independance. I can do much more if I use the chair than if I don't. Plus, if I don't have a chair, I really don't want to "go & do". Like go to the store, or even to work. Without the chair, the business of life is really a drain on my energy.
And fourth, I notice an increase in symptoms and pain when I am more physical-- like standing in line, or grooming a dog at a dog show (my daughter Heather, hubby Ron or professional handlers who I now consider my friends run around the ring with our dogs-- although I have done it myself--and fallen down!). And, using the chair helps decrease the feeling of "creepy-crawlies" in my legs. (Literally feels like there are things crawling around INSIDE my leg... kinda hard to fall asleep when that happens...yuk).
Multiple Sclerosis is:
- NOT a mental illness
- NOT contagious
- NOT preventable or curable (YET!)
http://www.msfacts.org/index.php (one of my favorites)