Tom opened the meeting and suggested we announce who we are, for our guests, and tell whether we have MS or are a support person. We went around the room and stated our names and told a little about ourselves. When we got to LeAnn Smith, one of our guests, she stated she is looking to start a MS Support Group in Norman, and came to see what we do and how we operate. She emphasized that at this time, she is only looking at the possibility of starting one, there are “several things” that have to be worked out before that can happen.
Our other guests were our speakers, Dr. Rebecca Larson and David Lantis. Tom announced the upcoming events for the next few weeks, including Tuesday at Tinseltown, March 28th. This is an event where we can see any movie for $4, anytime on Tuesday. Proclaimed an ATOMS Nite.
We discussed attending the Jones Theatre, on Heritage Boulevard, in May. That can be discussed more at the April meeting.
There was a reminder that the MS Walk is April 22. Also, a reminder that due to Easter being on the 3rd Sunday, our meeting is moved to April 9th. Father’s Day is also the 3rd Sunday, so our June meeting is the 4th Sunday, June 25.
Tom and Emily are going to try to get a speaker from the Lighthouse for our April meeting. Edwards Park “is” reserved for our May Picnic. We will again have hotdogs and hamburgers,with a potluck. We will meet at Johnnie’s on July 16 for our July outing.
We discussed meeting at Will Rogers Park for our Xmas dinner location. A survey will be sent out to the membership to get everyone’s vote/opinion.
Our speakers were then introduced. Dr. Rebecca Larson and David Lantis. They spoke of the research they are doing and said they wanted to get more people involved in the research. Ms. Larson spoke first. She stated that during her undergrad, she did some research of each side of the body, and her dissertation was on single leg and bone density; the standard research is on only one side. She has since studied cross sectional studies of legs, walking, targeting lower body.
Bone density should be done on both sides to determine the weakest side. 13% of individuals are missed for osteoporosis because the testing is only done on one side of the body.
David Lantis then spoke, stating that he was doing his dissertation on asymmetry as its own symptom. If we can test and diagnose, then we can improve quality of life. Exercise can prolong individuals to better quality of life. For instance, foot drop. He’s looking at the muscle behind the shin, involving one study being done on asymmetry. Another study is on electrical impulses. Balance & posture relationships.
Muscle of shin and Asymmetry are two different studies. You can participate in both studies. They could begin intervention studies with the data from these studies. Dr. Larson has “invested in 1 parking space next to the door for study participants to park, so you don’t have to walk a long distance. If anyone is interested in participating in the research, they are interested in you. They need more participants.
Dr. Larson stated that Asymmetry was not discovered by reading in any textbook; she discovered it by research. And David was continuing that study.
Several attendees mentioned they didn’t know about the studies being done.
David stated they begin by asking everyone which is their dominant & non-dominant side, both with MS, and Non-MS. Age reflex – gives a good indication of firing of brain without EEG..
Phase 1, their research is currently in phase 1, strength & reflexes of the muscle, also looking at Oxygen of muscle. Phase 2 is looking at results (the end product of the research).
Research participants are compensated for their time for the research study.
They want to classify asymmetry as a symptom. She wants to get info about MS out to rehab & trainers 3-4 years before intervention studies. They want to do “toe tap” study, is also showing to be good for brain connection.
The study is a Five or Six visit duration. Greg’s studies, who was at the January meeting, can be done every 24 hours, David’s study can be done every 48 hours. They are doing a study on relapsing/remitting, but other studies will be studying other areas of MS, other forms of MS. After this study, they want to do training intervention.
They talked about Aerobics, and pre-cooling, which is a cool bath before exercising.
Tom asked about Cryogenics.
They said they will be happy to come back and give us the data they found.
David – cannot prescribe, but believe will be able to be comfortable in providing info to patients. Two open studies, strength of muscle & electrical impulse.
They have to get their studies approved by VA to work with VA patients. And they have to get letter from your doctor before approving participants for the study. Also looking at Home-based programs.
There were lots of questions being asked & each speaker separated out to answer specific questions of the group. They took a list of interested participants. Took names & info for persons interested in not only participating, but also those interested in the data after the study..
We were adjourned.