About Me

  • Gender Female
  • Age 74
  • Relationship Married

My Story 0 Appreciate this

In 1988, I was diagnosed with MS. The main symptom that lead to my diagnosis was optic neuritis following major surgery. Before my diagnosis I had experienced symptoms of weakness on my right side and occasional falling when I started to run and my legs wouldn't move. I also experienced periods of extreme fatigue. These symptoms exacerbated in the summer when temperatures would rise to 100 degrees. Thinking back over the years, I realized that at age 22, I was so severely ill with Mononucleosis (Epstein Barr) that I was hospitalized and my legs were so weak I had trouble walking. At the time I figured the weakness was due to the severity of the illness and didn't relate it to MS. I gradually regained my strength in my legs. After my diagnosis, my vision gradually improved to near normal. I was able to function much like I did before the optic neuritis. Over the next fifteen years, my right side gradually became weaker. By 2002, I was falling due to foot drop. I started wearing a brace on my right foot, which helped to some extend. By then we were living in the Czech Republic where I had to cope with cobblestones and uneven sidewalks. I used a cane. This was helpful in alerting people around me to stay clear of me. However, the cane didn't help when I began to fall down. I fell often. In 2006, I realized I needed to set aside my pride and start using a walker. Right after I made that "walker decision" I was "miraculously" given a three-wheeled walker. How that came about is a story of it's own, which I will place one of my future blog settings. The walker gave me freedom like I hadn't experienced in a long time. To this day I call my walker my faithful buddy. In 2009 we moved back to the US. Having more time available, I began to plan a Walk for MS and Parkinson's cure. Parkinson's was included due to the fact that a very close friend had been diagnosed with that disease and was facing some major challenges. Over the next five years we raised close to $50,000 for MS and Parkinson's research through the American Brain Foundation. In 2013 I began to have symptoms beyond the weaknesses on my right side, balance problems and fatigue I had been dealing with on a daily basis. My hands started cramping and this continued to where pretty much most of my body was cramping. On top of that I became extremely sensitive to temperature changes and air movement. I also started having bladder infections which I never had before. Up until that year I had managed my MS without any medication. I started taking meds to control the symptoms. I also started taking meds to hopefully slow down the MS disease progression. Several years of Copaxone, followed by Tecfidera, back to Copaxone, followed by Ocrevus, and now I'm in the process of getting approved for Mayzent. Earlier this year, February 2019, I fell three times within four days. My right hand and my right arm/shoulder were broken. I now have osteoporosis. In 2012 my bones were healthy. Is the osteoporosis a side effect of all the strong medication? I am now on medication for that. In addition to the meds I take the daily supplements: Vit B12, cranberry extract, Vit D, Calcium and Magnesium, and high dosis of Biotin.

Interests

Living Well with MS Healthy living, Mobility and accessibility
Getting Involved Walk MS, Bike MS, Advocacy
Research Research news
Hobbies and other interestsI have always traveled and up till now, together with my husband, I have been able to travel to and through Europe on an annual basis. We visit our family and friends there. Contact with them is a very high priority for me. We also go on a 14 passenger barge/bike trips. I stay on the barge as we travel through Holland to France on the canals and rivers; Bert and the rest of the group ride their bikes and visit historical sites during the days. Writing is another interest as I'm writing my life story to pass down to my grandchildren. I used to sculpt and hope to get back to that someday.

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