Team Leader

ROBYN EMBREE

Growing up I was very active, and I loved being outside.  In a former life I am pretty sure I was a lizard, because being out in the sun was what I loved most.  My friend and I rode our bicycles everywhere, sometimes not to any place special, we just rode to ride.  I played many sports in high school; field hockey, basketball, tennis and ran track.  Riding horses in the hills around Pleasanton, California was a favorite relaxing activity. 

My MS story began back in 1988 when I was about to turn 33.  I had been married (to a cute fireman I met while horseback riding) for 12 years, had two beautiful, young daughters, and just moved back to the Central Coast of California after living for some time in Big Lake, Alaska, where those two beautiful daughters were born.  I lost my mother to cancer, she was only 54, and I knew I needed to get back into shape, so I started running, doing aerobics and playing tennis again, while working as a VP and Business Manager for an insurance type company, helping at the girls school and being very active in the PTA.  After losing my grip on my tennis racket several times, (it was very hot) and having to forfeit during a tournament, I started thinking about how I was also “tripping” a lot, while running in the early mornings.  When I started experiencing numbness in my legs, feet and hands, and around my midsection, I decided to get a physical checkup.

After the physical checkup, my regular doctor informed me that he thought what I had was a “Neurological Problem” and he recommended I see a Neurologist who could do further testing.  Hmmm, a “Neurological Problem”, what the heck did that mean?  Further testing?  What kind of “further testing?  Was I going to die?  What about my husband and my girls?  Well if that doesn't scare you, I don't know what would.  At that time, MRIs were not readily available, the Units were trucked around to different areas by an 18 wheeler.  We would have to wait for the MRI Unit to come to the area.  Meanwhile I had Spinal Taps, and different Evoked Response Tests, to determine what I didn't have.  What did they mean “what I didn't have”?  Didn't they know?  Weren't they the experts?  Finally, the MRI Unit was in the area, and I was going to be placed in this tube to get tested, did I have someone who could drive me?  Why did I need someone to drive me?

The day for the MRI came, (you truly need to appreciate the advancements they have made to improving the MRI experience.)  Being extremely claustrophobic, I was a bit apprehensive, but there was medication that would help calm me.  They strapped me to the sliding tray, strapped my head in place so I wouldn't move it, and started sliding me head first into this very narrow, very dark tube, that was only an inches from my shoulders and an inch from my nose.  Well, that was certainly not going to happen!  So after, let's say many Valium, I finally got my MRI done, but now had to go home and wait for them to read and evaluate the results.   So, they showed me on a slew of X-ray like films what looked to be a lot of dust looking stuff on my brain, and told me it was probably Multiple Sclerosis.  At the time they said that the cause of MS was unknown and that there was no cure. Remember it was 1988, and the World Wide Web was still being developed, the only information they gave me were some papers to read about MS, which was not very much, and an 800 number to contact the National Multiple Sclerosis Society, so I might talk to someone with more information.    The only medications for MS were currently in “trials”, and hoped something would be available soon.

 

I tried several of these new “MS medicines” along the way, as they became available, but they were still being perfected, and I found that the continuing deterioration of my physical being, along with the fatigue I was experiencing, started to weigh heavy on my mental well being also.  Denial is a great thing, but I was only trying to fool two growing girls, and a husband who saw right through my act.

 

Now, to make an even longer story shorter, yeah I know I have been going on a bit, we can fast forward to present day.  Along the way with the undying support of a great family and meeting two wonderful ladies, who became and will always be my Best Friends Forever, at their MS support group, (HOPE 4 MS) I have heeded some advice that was given to me back at the start that I should not give more credence to this disease than it deserves, and I took back control of my health.   One of my daughters got me back to the gym, and helped me with better eating habits which included smaller portions of more nutritional foods.  At the gym I got into an extensive exercise plan with an enthusiastic Physical Trainer, who was very confident that he could have me walking again in 6 months, which he did, and I am proud to have finished a two mile Turkey Trot that November, and climbed a mountain in Alberta, Canada the following spring.  I thought I could, so I did.

 

What Does Hope Mean to You? 

After 13 years of being involved in the HOPE 4 MS support group, it was hard not to think of it as “Helpful Options and Positive Energy.”   The experience has taught me a lot, and I have found own my mantra of  “I don't have to be better than others, I only have to be better than I was yesterday.”  So to me hope means even more, by helping others consider their own potential using positive energy.

Diagnosed in 1989

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