Co-Founder / Team Leader

PATRICIA JOHNSON

After chasing symptoms for five years I was diagnosed with MS in 1990 at the age of 38.  It was a relief  to have my issues finally identified although horrific at the same time to know I had lesions on my brain and not know what that meant.  I cried for an hour in the Neurologists office but had hope when he said he felt within five years there would be a cure  based on research in the pipeline.  Now 26 years later I am still hopeful for that cure yet my optimism has changed.

In 1983 I suffered a concussion & other injuries in a car accident. Thereafter, I healed but dragged my previously injured left foot when I walked or ran any distance.  In 1985 I got up from the flu barely able to walk.  I went to a chiropractor & my function returned except for that darn foot drag & a slight limp.  The limp continued beyond my MS diagnosis for years & I used a cane until progression necessitated  the switch to using arm crutches then a walker and eventually a scooter.  To this day I wonder how those car accident injuries morphed into MS since those injuries are where my MS symptoms appear.

Throughout this journey I lost the hearing in one ear for a few weeks but otherwise my symptoms exacerbated during times of extreme stress, fatigue or heat.  I continued working outside the home until 2000 & worked a home based business until 2012.  Along the way I endured the nausea from  Betaseron for 5 years, several years later I tolerated Avonex nausea for 5 years & switched to Tysabri for 3 years.  Regardless of whether or not I was on a drug my MS progressed so I decided to stop the drugs & instead focus on wellbeing through other means.  In 2010 I had the CCSVI procedure & the results were remarkable albeit only lasting several months. What this showed me was that it is conceivable for the body to function symptom free.  I now  pour over as much information as I can seeking the ever elusive answer to the MS puzzle.

 

The things I feel confident about are that exercise & a good diet are crucial.  A good attitude & social contact is healthy.  Education is important in order to make informed decisions for ourselves. There are many things out there bringing relief & improved function but we need to  be our own researcher & advocate to find them.  We are all different.

 

What Does Hope Mean to You?

To me, hope is a desire for improved health and reversal of MS symptoms.

Diagnosed in 1990