The Multiple Sclerosis Tapestry: Interviews With People Whose Lives are Affected by MS
Vicki is one of those women that you gain strength from simply knowing her. She writes about her disability in a way which is genuine but never self-pitying. Vicki is an extraordinary writer and provides a wealth of information about MS on her personal blog. It is my personal opinion that she has one of the best MS blogs out there.
I now present to you...Ms Vicki Bridges
Vicki Bridges, Down the MS Path
Type of MS: Secondary Progressive MS, also severe osteoporosis
Bio: I was a single mother from the time my two boys were 1 and 3. I was in Marketing with the travel and hospitality industry. I am now 59, on disability, lucky enough to be living with my life partner, sweetheart, and loving caregiver.
When were you given your official Multiple Sclerosis diagnosis? I was diagnosed late in 1989.** Did your diagnosis take a long time?** The first hint I had MS (as I remember) is detailed in a post called My Introduction to MS in 1982 when my knee was mysteriously numb. At that time I had no reason to think it was MS. From the time of this incident to diagnosis was seven years. During that seven years I experienced unidentifiable temporary problems with my knee, hand, and vision. I later learned diagnosis normally took between six and eight years. Mine was an average time period.
What tests did they do to get to the diagnosis? I was finally directed to the head of MS research at Southwest Texas Medical Center (STMC). There, over a couple of weeks, I ran through a ton of tests -- they were researchers, after all. I do not remember all of the tests. They eliminated Lupus, Lyme's disease, Parkinson's, and a couple of other similar MS look-a-likes. Then there were tests for balance, touch sensitivity, prick or dull, vision, spinal tap, urine time/volume, and maybe more I don't recall. Finally, I had an MRI.
Did you know in your gut that you had MS before you got the official diagnosis? By the time I went for tests at STMC, I had a feeling it might be MS. The tests confirmed it.
What was your reaction to hearing that you have this disease?
Initially, perhaps I felt relief because all of my temporary symptoms finally had a name; facing the unknown is more frightening than facing MS. I knew I had a lot to learn. I was grateful my boys were in high school and not toddlers.
I went through grief stages. My denial was that I did not think it would change my life as much as it did. I was more frustrated than angry. I bargained with myself; "I'll rest more tomorrow if I get through today." I was sad for things that will never be, but my acceptance brought an inner peace, helping me make new pathways. All of these feelings revisit now and again.
What sorts of symptoms do you or have you experienced? Over the last 19 years, I have had the following symptoms, some have come and gone, others are always with me:
Balance issues, Bladder problems, Blurry vision, Bowel problems, Depression, Emotional lability, Excessive daytime sleepiness (somnolence), Fatigue, Foot drop, Heat and cold exacerbate symptoms, Heavy sensation in legs, Lack of muscular coordination (ataxia), Night-time leg spasms, Numbness, tingling, pins & needles (paresthesia), Optic neuritis (inflammation of optic nerve), Pain, Stiffness/spasticity, Swelling in hands and feet, Tremors, Trigeminal neuralgia (tic douloureux), Uhthoff's phenomenon, Walking difficulty without aid, paralysis, lost function in one arm..
What meds, treatments, or alternative therapies have helped you the most?
When I was diagnosed, there were medicines only for certain symptoms, not the disease. When interferon was first approved by the FDA, it had limited availability, and I was not on the critical list. At this point, it is less likely to make a big difference in my life. I have chosen not to take a disease-modifying drug. However, I do take Baclofen for the spasticity and tightness, and I have recently started Tegretol for trigeminal neuralgia.
Do you have a personal philosophy that has helped you to cope with having a chronic illness?
I try to maintain a positive attitude. I may as well enjoy what I can, and I always have hope - there is always hope. I could be really angry or grumpy, but that would only affect others in a negative way and certainly wouldn't take the MS away. I realize that I have a Pollyana Attitude but I prefer to smile and live with love and inner peace.
What advice would you give to someone who has just been diagnosed with MS?
Realize your life is not over. You have just taken an unexpected turn. Relax, learn what you can, pay attention to your body, document medicines, treatment, dates and results. Don't worry because stress will only speed things along. Listen to other MSers because they may have learned something that is helpful to you. Be open-minded, but make decisions you are comfortable with.
What is the worst thing about this illness?
MS is so unpredictable; it brings its own measure of the unknown. I spent much of my life learning to be independent, and MS undermined much of that achievement. I have had to re-define the scope of my independence and intertwine it with my increasing dependence on my caregiver.
Are there any silver linings to having MS? If there aren't talk about that too.
There is always a silver lining. Sometimes linings may be hard to find, but they are there. My progressive type of MS is progressing slowly -- so slowly -- I feel lucky. As I become more physically dependent, I know I am lucky to have someone I love who I can depend on. I have the luxury of time to write, and I have found on-line friends who share my journeys. These are some of my silver linings.
Do you believe that we will see a cure for MS in our future?
Researchers are getting closer. It seems the medical community believes MS is ahead of other conditions for possible cures. The last decade has seen some major break-throughs, which makes this field exciting. There are more MS studies and more researchers focusing on MS than ever before. As they are searching for a cure, perhaps they will find a good method for modifying the disease. Will they find a cure? I don't know, but there is always hope.
If you could tell all the doctors and neurologists something that they would listen to, what would it be?
When I was told my life would change, perhaps drastically, perhaps not so much, the messenger's compassion was most appreciated. Each patient hears it for the first time, even though you may have said it often.
Continue to appreciate the joy of life. Keep a positive attitude and a healthy sense of humor. It's not what you can't do, it's what you can.