July 10, 2010 Newsletter
Jabber Jabber Jabber
The meeting was a good one with lots of information shared. We focused on our delightful new person named Cynthia to start things off. We discussed doctors, meds, insurance, frustrations, CCSVI and common threads.. We comfortably communicate so well about many things that really only we understand.
As we know, everyone is different but it was nice to hear of a couple of good stories. Cynthia has been having a difficult time with exacerbations and began going to UCSF where they recommended the new drug Ampyra. She had just begun taking it and said she can feel a big difference in her balance and walking. Lisa’s doctor started her on a more radical drug Rituxin last summer and she is doing very well. She walked the 5 mile river trail ahead of the meeting and has no heat intolerance anymore. She thinks she may go back to work!
There are still many remarkable stories relating to CCSVI and MS patients worldwide are clamoring for the non-drug “Liberation” to open stenosis in the jugular veins. It has been difficult to figure what the negatives may be that are holding things up. We now have several trials in motion as well as many people going out of country for the procedure. A couple of places in the U.S. are very close to beginning testing & treatment. Our local Interventional Radiologists appear interested, however they are incredibly busy and simply don’t have the time. We will continue to follow things closely.
It was brought up again about how nice it would be to have a care giver break out group. It is an excellent idea that we have tried in the past but turnout dwindled and made it hard to continue. If we get more than one care giver at any meeting in the future we will most certainly do it again.
It was discussed again about the value of going to a MS Clinic or specialty doctor such as UCSF, Davis or beyond. For travel concerns, we remind you of Angel Flight West who will fly you to medical appointments within a 600 mile radius at no cost and happy to do it. They make sure you get to the doctor’s door!
We talked about so much more than can be put on paper which is what makes these meetings very valuable.
Our August meeting is actually a Kayaking event at Whiskeytown Lake on August 13th at 6:00 pm. This event is free to us and we go in two man Kayaks with a guide riding & rowing in back to make this adventure possible for us. These wonderful volunteers carry us if necessary & get us in the Kayak and then paddle around coves & waterways. Those of us who participated last year give this a two thumbs up as an activity many may have thought impossible! More information will come out later, however if you are interested please e-mail us so they know how many boats to get ready.
In the meantime, stay cool & be well.