Now eligible for an AARP card, I am officially classified as ‘middle-aged.’ I am extremely excited about this new phase of my life…my encore. Any good story has underlying drama…
Since 1989, I have lived with two chronic disorders, insulin-dependent diabetes, (IDDM), and onset of Stiff Person Syndrome, (SPS), diagnosed in 1994. SPS is a rare neurological disorder categorized by rigidity, stimulus-induced spasms, and unprotected falls. I am a living, sometimes shuffling, brew of Chock Full of Nuts. I was diagnosed with Hashimoto’s Thyroiditis in 2010. In sharing my life experiences in this blog, I wish to encourage living forward with chronic illness and physical challenge with determination, humor, and hope…”in spite of.”
Midlife colliding with chronic illness, Chronic Chaos. As my life continues to unfold…
“I am still making order out of chaos by reinvention.”~John Le Carre~
Good day to you Debbie,
Just a note to let you know I was here. Hope all is well, and this looks like you spent a good amount of time on this. Nice job … peace,
Hi!
Thanks for the note. I hope you found a smile & some encouragement. I love sharing my thoughts!
Hi,
I follow you on facebook and enjoy all the encouraging posts. How can I get connected with others that have SPS? support groups?
Thanks, Kristin
I do not personally participate, but there are some SPS support groups on facebook. I am hesitant about sharing such sensitive personal information in a social networking forum. Inspire, under the NORD umbrella was a good private (create an ID) support group, but many left for the facebook groups. I understand the need to connect with others. I found comfort & understanding in an earlier email group that is no longer available.
I wish you all the best.
Debbie
I just found your website — looks like you just posted a message. I will head over to facebook.
Been diagnosed with MS past 8 years and diabetes, thyroid & epilepsy — now with a great diligent researching wife, we found an answer 6 weeks ago. SPS now the research begins.
Mark
Hi Mark. I am sorry you have SPS. We share a trio of ails. It is good you are taking the offensive in becoming an informed patient. Understanding SPS & how it personally affects me has helped save my skin a couple of times. Best of luck to you!
Always,
Debbie
You have helped me understand my husbands condition and struggles. PS. Need some help finding a specialist in Denver. Best of luck to you. Thank you, Denise
Thank you Denise. I am sorry your husband has been diagnosed with SPS. I wish you all the best in finding a good neurologist & beneficial treatment.
Always,
Debbie
Thank you Debbie for taking the time to put this site together. I am a retired physician from Knoxville Tennessee. After being diagnosed with young onset parkinsons disease in 2013, then atypical parkinsons disease probable MSA at Vanderbilt in 2014, then psychogenic after a cursory 25 minute exam at Mayo clinic in Jacksonville in 2015, I was ultimately diagnosed with SPS after EMG studies, proper physical exam and a history of of autoimmune disease including hashimotos. Short story long…..it’s great to find your site and know that I’m not alone.
Thank you.
Thank you & best wishes.