I was so glad to get tje invitation to come to this OT study. I was diagnosised in 2003, after going through all kinds of tests with one nuerologist,MRI, blood work, Spinal tap and EMG- while lying down. I was not happy with this doctor as he told me he would try to prove I wasn't crazy. My PCP helped me find a doctor at Cleveland Clinic, neurologist who specialized in movement disorders. Dr Patrick Sweeney met with me and my nursing student daughter, who had been doing all my grocery shopping since she could drive. He asked if I could stand in a grocery line, my daughter laughed and we told him my story and that is when he diagnosised me with OT. He stoppped my neurontin and started me on a low dose of klonopin !mg cut into quarters and to take a quarter for a week and increase to another quarter every 2 weeks at bed time. They knocked me out, but I was up and alert in the am and able to go to work. Gradually he increased the klonopin but I wouldn't take it in the am as I had to drive for work, and could manage being a hospice nurse by sitting on the patient's bed or around the table with the family. The doctor had me try all the other meds discussed at the study groups, but I had side effects or they did nothing at all.
After 3 years of still working I realized i was a safety risk to myself ande patients as I couldn't walk behind them with their walkers on when they mozzied along. And if a family member followed me outside I had to lean on something. usually my salt covered car. Patients and family member were noticing my unsteadiness and showed concern. This is when I realized I could not be a burden to them during this most stressful time of their lives and went on disability.
My doctor was very pleased, as he wanted me to start taking my meds in the am. we worked them up gradually and now I take 3mg of Klonopin in the am and 1mg at night. I am able to tolerate it and am not sleepy and find it helps for about 6 hours. A glass of wine at dinner helps.
Leaving my job and patients was the hardest thing I ever did. I am extremely spiritual and taking care of them only increased my faith. It is hard to depend on others to do simple things, but am learning how and talking more about my DISEASE openly. It is hard when you look fine and can walk forever but can't stop to talk.
Going to Omaha with my daughter made me realize I am not alone. I spoke to a friend who lost his wife to cancer last month and he asked how it went; and I told him I feel like part of a group and not so alone. He said his bereivement group is doing the same for him. :
Thank you all for your kindness and hope to keep in better contact.