ATOMS Minutes 8-21-16

HERE’S WHAT YOU MISSED!

Rita and Emily supplied the snacks. They stayed on the healthy side with lots of fruits and vegetables, with popcorn for something different – along with the standard drinks. There were several bottles of a no/low calorie drink, as well as some of the usual.

Although it wasn’t mentioned in the newsletter, and even somewhat of a surprise to Tom, we had a speaker. Dr. Aaron Farrow, Neurologist. He works at OU Physicians.

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Tom started the meeting. We had a couple of guests, so in our usual fashion, we went around the room and introduced ourselves.

Tom spoke of the August birthdays. Our next meeting will be at Edwards Park between NE 10 and NE 23rd off the I-35 Service Road. We will have our Ice Cream Social for the September meeting, September 18. We have the park reserved from 11 a.m. to 3 p.m.. Tom says he’ll be there about 11 to start setting up.

Also in September, is the MS Bike event, September 24th & 25th. Tom and Emily are sponsoring a rest stop on Sunday. Tom talked about some of the other aspects of the Bike event and volunteering. A sheet was provided seeking volunteers at the event and what’s available. Everyone can get involved. Contact Tom to find out more about helping him and Emily at their booth/rest stop. Contact Jason Klassen, Programs & Services Coordinator, at 1-918-488-0882 x 35113, to find out more about helping at other locations.

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The Get-Away Weekend Trip at the Post Oak Lodge in Tulsa is on the third weekend in October. We discussed canceling the October meeting, which falls on the same date, but some others in the group wanted to go ahead and change the October meeting to the 4th weekend, since they weren’t going to be able to attend the Get Away Trip.

ADDED: If you are interested in attending the Get Away trip in Tulsa that weekend, Oct 14-16, purchase your tickets  by calling 1-800-344-4867, (or on a cell phone, click on the call button below), choose Option 1.  Or go to the website (click on the “Info” button below).  Tickets are $5. 

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Make your room reservation by calling (918) 425-2112, or on your cell phone, click on the call button below.  Rooms are $93/night. Reservations can also be reserved through their website, (click on “info” button below). Be sure to mention the Group ID #1629.

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The theme for this year’s event is “Murder Mystery”.

A discussion then came up about Outreach and getting the word out – where it is and where it is Not! The guests said that they had been looking for a group to get involved with, and finally met Jody, who told them about the group. They stated that we needed to get more of the word out that we were here.

Next Dr. Aaron Farrow, OU Science of Neurology, OU Physicians, spoke. He stated that he did not have an agenda to speak from. He told us about himself, where he trained and that he’s been in practice since 2010. He also stated that there is only one other physician in the office working with him at this time.

He stated that his connection with MS is that he has family with MS. He has been associated with, and has known about MS since he was a young boy.

He talked about Neuropathy, what it was and the definition (Neuropathy is the term used to describe a problem with the nerves, usually the ‘peripheral nerves’ as opposed to the ‘central nervous system’ (the brain and spinal cord).

A question was asked about stem cell research. He stated that it is currently being done in Canada and the US. He went back to a description of MS, and how the stem cell therapy is thought to grow back the nerves. He feels that the stem cell therapy is for extended stage MS, or severe symptoms. He described how the body works and the auto-immune diseases. He described MS and that a new attack was described as a ‘relapse, or an exacerbation’. He stated that the two terms (relapse and exacerbation) were exactly the same. They were two words for the same thing.

There was discussion of medications and treatment. He stated that meds are to decrease the frequency of the relapses, since there is currently no cure for MS. The meds may also decrease the brain atrophy. Drugs preserve the brain from ‘fog’. They keep you functional.

There was a question about how he determines which drug he prescribes for a patient. He said that an older person with a new diagnosis usually does worse. Also males usually do worse. These are two of the things he looks at before prescribing medications. Tysabri, (an infusion drug), and Techfedera, (an oral drug), are two of the most common drugs prescribed.   Gilenia, (the first oral med), and Lentrada, (another infusion drug), are two other meds on the market today. He mentioned that Copaxine is a copolymer.

Before prescribing new drugs, he looks for NEDA (No Evidence (of) Disease Activity) in current medication. And after prescribing a new drug to see if it is working.   There are currently 12-15 drugs available, on the market. But not every one is for everyone. He described Tysabri as a strong drug, and Lentrada as a “pretty aggressive drug”.

When talking with patients, he has a discussion of the symptons, and uses his arsenal of experience to prescribe a drug.

A question and discussion pursued of the JC Virus, what it is, how you get it, what is available to combat it, what tests are done to see if you have ever had it. He stated that the majority of the population has had the JC Virus sometime in their life.

He briefly talked about a new drug currently in trials in Europe, which looks promising to the treatment of MS.

Dr. Farrow kept everyone engaged and actively talking. When no one else had any more questions, the meeting adjourned. A Thank you to Dr. Farrow for coming today and providing us with a very informative meeting. We also invite our guests to return, and invite our regular attendees to invite others.