October 7, 2006 Newsletter
Hello Everyone,
We had a great turnout for our 2nd Anniversary meeting on Saturday!
It is hard not to notice how fresh everyone looked because of our cooler fall weather. In a way, it could almost be looked at as everyone surfacing after another hot and busy summer, with smiles on their faces, as if to prove that we are truly tough survivors! There were many old friends as well as some new ones.
We began the meeting with just a few items of mention. The biggest was our discussion of horseback riding. Peggy Singleton has several therapy type horses and has offered them to us to try. Marcia Muterspaugh actually did ride one last week as her first riding experience and absolutely loved it. Many of you saw Marcia at the meeting and know that Marcia is in a motorized scooter but with help from Peggy’s assistants was able to ride for 8 minutes! If anyone is interested in more information contact Peggy at 221-3198. HOPE 4 MS will also be pursuing funding assistance for this program.
It was noted that there will not be a MS Walk this year so we suggested having a HOPE 4 MS fundraising event. Sometimes, maybe we just need to be creative and take things on ourselves. With our collective thoughts & efforts we can do something big for our cause!
We then introduced Todd Provence from Pfizer Pharmaceuticals who we can thank for the fantastic catered food as well as procuring our speaker Dr. John Gambin from Humboldt Neurology. Todd wants to continue working for & with us through Pfizer. What a great guy to have on our side.
Dr. Gambin has been in clinical practice for 30 years and has a very thorough understanding of the disease, studies and patient viewpoints. He spoke to us and answered questions for a good two hours. His talk centered around the current available medications and how they function in our brain and blood vessels. He had some very good charts, data and an excellent no nonsense way of communicating his information to us. He offered us so much information and again, as others have, stressed the importance of early drug intervention backed up with charts showing disability progression for people who have taken drugs vs those not. It is considerable and his theory is to begin something soon after diagnosis as a good start and then you at least have a leg up and can change as new treatments become available. He made mention of how he could look around and tell which people had been diagnosed before the drugs were available and those afterwards. In the early stages one may not want to have these major drugs in their systems, but as Dr. Gambin says, you must look down the road and be aware that progression is a real ongoing component of MS not to be ignored. Denial doesn’t stop the facts. As he also said, these drugs are not designed to make you feel better, they are to slow progression and data shows that they do in fact do that.
When asked about Tysabri, Dr. Gambin stated the current warnings as well as how well it had done otherwise in trials. In fact, he was involved in the trials for Tysabri. He was asked if there was an infusion center in Eureka and he said yes. It was discussed that we have no center here and currently have to travel as far as Roseville, to the dismay of several. He also spoke of many promising drugs that are as he says, “still in the petrie dish”. We can find comfort in the fact that there is a huge amount of research happening that shows hope for the future.
We then ate anniversary cake and the last people left well after 1:00 which is a sign of a good meeting!
Our next meeting will be November 4th.
Patricia & Beth
We will be at the meeting on Sat. November 4. See you there!