Hello all, and Happy Mothers' Day to all you caretakers out there~ whichever gender or age you may be!
I'm just home from another week in Bethesda at NIH, where I'm part of the Parkinson's Disease Risk Study. I'm considered a "normal control" in that study ... someone with genetic risk but no symptoms yet ... they are looking for early biomarkers to help the next generation reach diagnosis sooner and receive interventive medications sooner.
I've never accepted the diagnosis of RRMS, and last fall I discontinued the daily injections. Since stopping, I feel stronger, more focused, more like my old self. I feel less false, and more true to who I am.
Bethesda compared my present MRIs to those they took eighteen months ago, and noted a worsening of lesions. I know that some will stand up and say "See - you stopped injecting and now it's worse."
But to them I will say I stopped injections only seven months ago, two months after I was prematurely retired from my classroom, following a full year of downward spiraling emotionally, cognitively, and physically. I believe the lesions worsened during that year. But since stopping those injections, I've rediscovered my self ... my self esteem, my self respect, and my determination and perseverance.
I'll see my MS neurologist next month, and share the Bethesda reports with her. She is a kind neurologist, as many are, and she will hear me patiently but we will agree to disagree, as we usually do.
My medical folders still say I have RRMS; my MRIs tell doctors that. My folders also say I have depression; my family history would corroborate that, as I've coped with many challenges in life. It was only in that difficult year that I stopped coping, and fell apart, and lost my classroom as a result. I could lament that, had I stopped the injections sooner, I may have kept my job for a few more years, but as is said, if wishes were horses, beggars would ride.
The nightly injections were a constant reminder that I felt like I was living a lie. I will never accept the label RRMS. And I will no longer pretend that I'm working toward acceptance. I will not take injections that I can't believe I need.
I tell my story in my book. Folks who've been here for the past five years have read it along with me, before it was consolidated, written and published.
I've been retired for one full year now, and labeled RRMS for five. But I know who I am ... I'm a member of the PD Risk Study group in Bethesda, and I'm a "normal control."
I'm just home from another week in Bethesda at NIH, where I'm part of the Parkinson's Disease Risk Study. I'm considered a "normal control" in that study ... someone with genetic risk but no symptoms yet ... they are looking for early biomarkers to help the next generation reach diagnosis sooner and receive interventive medications sooner.
I've never accepted the diagnosis of RRMS, and last fall I discontinued the daily injections. Since stopping, I feel stronger, more focused, more like my old self. I feel less false, and more true to who I am.
Bethesda compared my present MRIs to those they took eighteen months ago, and noted a worsening of lesions. I know that some will stand up and say "See - you stopped injecting and now it's worse."
But to them I will say I stopped injections only seven months ago, two months after I was prematurely retired from my classroom, following a full year of downward spiraling emotionally, cognitively, and physically. I believe the lesions worsened during that year. But since stopping those injections, I've rediscovered my self ... my self esteem, my self respect, and my determination and perseverance.
I'll see my MS neurologist next month, and share the Bethesda reports with her. She is a kind neurologist, as many are, and she will hear me patiently but we will agree to disagree, as we usually do.
My medical folders still say I have RRMS; my MRIs tell doctors that. My folders also say I have depression; my family history would corroborate that, as I've coped with many challenges in life. It was only in that difficult year that I stopped coping, and fell apart, and lost my classroom as a result. I could lament that, had I stopped the injections sooner, I may have kept my job for a few more years, but as is said, if wishes were horses, beggars would ride.
The nightly injections were a constant reminder that I felt like I was living a lie. I will never accept the label RRMS. And I will no longer pretend that I'm working toward acceptance. I will not take injections that I can't believe I need.
I tell my story in my book. Folks who've been here for the past five years have read it along with me, before it was consolidated, written and published.
I've been retired for one full year now, and labeled RRMS for five. But I know who I am ... I'm a member of the PD Risk Study group in Bethesda, and I'm a "normal control."
Sir Falls-a-lot
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