My umpteen years of knowing Howard as a friend, fellow ST’r and our leader has encouraged me to share my ST journey. I always felt it was unremarkable compared to so many who suffer so much.
My symptoms started in1986 and came on gradually over a number of years. I thought my purse was too heavy, pulling my shoulder and head down…can you imagine? In 1989 I was correctly diagnosed by a neurosurgeon in Hollywood FL. He gave me the ST organization info. I contacted them right away, talked with Howard, and became a member and it’s been a great experience ever since. My family, friends, employers were (and still are) 200% supportive. Although I went through the usual denial, anger, uncertainty, and fatigue, I never forgot the power of prayer. “Pray without ceasing.” 1 Thessalonians 5:17
When Botox first became available for cervical dystonia, you had to have failed “oral meds” before you would be considered for the injections. My neurologist at the time prescribed Artane. Of the 20 side effects, I must have had 15 of them including red urine which was described as “no consequence”. The doctor impatiently told me I couldn’t possibly have all those side effects as thousands of people take Artane and if I didn’t want to continue with it he could not treat me in his practice. After only two months, I carefully weaned myself off it and never returned to that doctor. I found competence at the University of Miami with Dr. Carlos Singer and in 1996 decided to give Botox a try. For me, it was a roller coaster trying to find the right dosage. During the years with Dr. Singer, I also volunteered for clinical drug trials with Botox B, now Myobloc.
During my first 5 years with ST, my hardest task was ironing…for real! I was fortunate that I could arrange my work schedule to accommodate my needed afternoon rest and sometimes nap. Education and knowledge about ST began to replace fear and ignorance. My HUGE turning point was my 1st symposium in Orlando in 1994. I was stunned that there were so many of us…was it possible? I actually met Howard face to face and we’ve been great friends since.
Believe it or not, ST has opened many doors for me. I needed a break from my accounting work (24 years at that time), I went to skin care school and received my license in 1997 at age 53. I was the oldest person in the class. I arranged my classes in the mornings so my neck (and body) could get it’s rest break in the afternoon. My skincare license brought out a very creative, artistic side that I did not know I had. I love knowing that about myself. While I’ve returned to accounting, I’ve kept my license current and still have clients who insist I’m the best eyebrow artist in the US!
During my skin care career, I joined BNI (Business Network International). It proved to be an invaluable resource for me professionally and personally. I learned skills to speak before a group and use my ST as an education tool for BNI members. Although I am no longer a member, 7 years later, I am still connected with that core group of people.
My dual careers provides me the opportunity to barter for needed services. I exchange for massage and other alternative modalities. This privilege has introduced me to many new personalities and businesses which has enriched my life. I also volunteer at a local theatre group taking tickets or working concessions. This allows me to see the play for free!
My husband Bill has been my biggest supporter. As a matter of fact, we were married in Buffalo, NY on our way to the Montreal Symposium in 1996! After we moved to Biloxi, MS in 1998, I continued to travel to see Dr. Singer in Miami for injections. There was no one on the MS Gulf Coast that even heard of ST much less could treat it! The Miami trip got old after a few years and I transferred to Dr. Arce in Jacksonville. Dr. Arce’s scheduling was too hectic and I couldn’t count on the confirmed appointment so I stopped the injections for almost three years and to my surprise did quite well. I then found Dr. LeCour in Mobile AL for injections for a few years. His schedule for Botox became 2 days per month and only certain hours those days. I stopped going. Finally, a local new neurologist showed up on the radar. His name is Lennon Bowen in Ocean Springs MS. 228.818.2620. Dr. Bowen did his internship with Botox and ST and here he is on the MS Gulf Coast. WOW!
Actually over my many years with ST, my symptoms seem to have improved…who knows why? Sometimes “it” even wants to change sides! Through many years of “experimenting” with home remedies for comfort, I’ve managed to find a few inexpensive things that work for me and keep me off heavy meds.
Life is about choices. For mostly unknown reasons, ST has chosen us. This is an important and interesting chapter in our Book of Life. While external influences can have an impact on us, individually we can choose to relinquish feelings of powerlessness and reclaim confidence through acceptance. Acceptance is not giving up, but looking forward to the next exciting chapter in our Book of Life.
Under Howard’s tireless leadership, our ST/Dystonia organization offers us the experience, strength and hope that will empower us to cope with our disorder. We have all these tools (and many others).
- ST Membership (Your renewal keeps us strong).
- Symposiums with optional Travel Treasures
- Toll-Free ST Telephone support and interaction
- Regular news magazines to stay connected and share
- Pro-active website
- e-newsletters about new events
- Blessings to all
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand