I’m attending a discussion group today for people with multiple sclerosis or care givers of people with multiple sclerosis. It’s a round table discussion group that is lead by two different MS doctors. Many years ago, I was a patient representative for the drug Gilenya. I use to tell my MS story to a group of people either before or after the guest doctor would discuss MS and how the drug worked. I must admit it was a lucrative deal for a ten minute speech plus a free dinner. It came to an end when I changed drugs and started taking Tysabri. The drug companies, all of them, host these dinners to talk about their specific drug on the market. I don’t attend them. I had enough of hearing the information and getting a free dinner when I was a rep. myself. That’s what I thought this was when I got the invite but when I read it, something told me to go. I called my step dad and asked him to take me.
The theme of the discussion is Living Well with Multiple Sclerosis. The discussion topics are:
- Getting a deeper understanding of MS
- The rapidly changing MS landscape
- Recognizing MS relapses and treatment options
- Understanding the leaky pool and its concepts
- DMT treatment options and emerging therapies
- Communicating patient needs with their healthcare team
- Empowering patients to be active participants in their healthcare
- Hearing what you need to know about a healthy lifestyle choices and overall impacts of quality of life
Many of these bullet items I’m in touch with but I’m always interested to hear new views. What really pushed me to this was Dr. Krieger, who is actually my neurologist’s in NYC boss. I’ve never met him or heard him speak. I wanted to hear his views since I’m a patient in his office. Part of being a patient with MS, is being active with what is going on in the world of MS. I believe, quite strongly, that no matter how well you’re doing, you should know what the research is and what the news is surrounding your disease, any disease. I speak from experience. I had my head in the sand for too long and I regret that now. Where I’m not totally in a wheelchair yet, I’m close. I probably could be better off if I new then what I know now, but hindsight is 20/20. That’s why I write my blog, so I can give my hindsight to someone that it can help. I will update you all tomorrow on the discussion group.