News from the meeting and study in Omaha NE, with DR. TORRES-RUSSOTTO

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#3105
Hello Gloria and Jeff
We pray that you stay safe and sound and are not too affected by that terrible storm - though I'm guessing you will be without power. We, so far away on the other side of the world, can only watch the live pictures on our TV and wonder at the savagery of Mother Nature. I look forward to your thoughts on the Omaha event once your lives have settled down and normality has returned.
Regards, Lynette
#3109
Peggy, it sounds as though the first meeting was a tremendous success. I know how hard you worked and I know everyone appreciated all that you did. I was so disappointed I was not able to be among those in the study.

Pat, you have done it again! Your notes are informative and concise. You did an excellent job letting all of us who were unable to attend, feel we were in attendance. Thank you for all that you do to "get the word out".

Betty
#3111
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.
#3114
Wonderful to read all the posts. Tim and I have just arrived home after our long, long road trip. We thoroughly enjoyed our time in Omaha. It was so wonderful to spend time with Dr. Torres and to be part of the study. Richard ......we never did get to actually meet....you were always on the other side of the room and I wasn't quite sure who you were. You really captured the essence of every time we were all together in your posts. We met so many wonderful people and hope to continue on with our friendships. I feel I really got a lot out of this whole experience and am much more able to cope with this "disease" now I know I am definitely not alone. Peggy...you did a fantastic job of organizing all of us....could not have done it without you. Gloria, Jeff and Beth.....so wonderful to finally meet you too and glad you all made it home safely before the terrible storm. Tim will be sending all his pictures on to Jeff to post on this site as soon as we are able to go through them all.
Take care everyone and look forward to hearing from you all soon.
Chris :)
#3120
Several people asked me for the name of my travel bag with the built in seat, and I didn't have it with me in Omaha. I have looked it up. You can find it online at walkinbag.com. I bought the Zip2 seat .... Wheels swivel, you can lean on the handle like a cane, seat folds flat to the back. The only negative is the seat is low. If you have bad knees it might be hard to get up from a seated position.
It was wonderful to see old and new OT friends in Omaha. The meeting and research were amazing. The Doctor and his staff were wonderful, interesting and so good to all of us! Thanks to Peggy, and all who made this happen! Maggie Neal
#3124
Betty wrote: As "golfnut" wrote: "I'm very curious as to what questions were asked - is there any chance to get some input from the Q&A session from anyone present?"

I would also like to know some of the questions and answers given. For those of us who were unable to attend, you are our eyes and ears.
Betty
Betty, there are much better (more detailed) notes now available elsewhere on this site and so I will not attempt to restate the many excellent questions that were asked by a number of people in attendance at both of the sessions where questions could be asked.

But your request does tell me that maybe it is time to post my own list of questions that I had prepared in advance hoping that I would have an opportunity to get some answers. Those of you who were in attendance will recognize some of these questions.

The rest of this reply along with my own list of questions in its entirety was moved to the 2012 OT Meeting heading so that all can find it and contribute more easily.
Rich
#3355
I have such great memories of our meeting/research in Omaha last year and I thought you might like to know that I have submitted an application from the OT Community to the - 2013 Rare Disease Day - Researcher Hall of Fame for Dr Diego Torres-Russotto:

http://rarediseaseday.us/meet-the-commu ... l-of-fame/

The application included the following:
Dr Diego Torres-Russotto is both caring and compassionate, and has worked with tireless dedication to understand the mystery of Orthostatic Tremor. This past year, the first part of the largest study on OT began in Omaha, Nebraska. A team of 15 people from the University of Nebraska Medical Center headed by Dr. Torres volunteered their time to study a group of OT patients that traveled to UNMC. For his dedication to research this rare disorder, we are all extremely grateful to Dr. Torres.
I am sure that there are many researchers that will be submitted, but Dr Torres will always be in our Hall of Fame.

all the best,

Gloria
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