MS Support Meeting Minutes
We had our May monthly meeting, and it was decided that we would try to shoot for an October Walk... I'm looking
into the logistics and protocol with the powers that be and will hopefully have the info to share for an update at
next month's meeting. We had some great ideas and participation from the members, and a fun meeting.
Thanks to everyone who showed up! See you next time, and ... stay cool! :)
Also, here is the information from our April meeting regarding the Aquatics with Barb Batson. If I'm not mistaken,
I believe she said she was from Chattanooga, but she also said, if there was enough interest in the area, she
could work with Nashvill NMSS to set up a class in the area. Just click on the thumbnail document
Guess I've slacked off on updating these meeting notes, huh? Bad group leader!!! :) Anyway, we had
discussed in June and July the possibilities of the October Walk, but it was the general consensus that we don't
have enough people and the people we do have don't have the time or energy! to put this all together... so we'll
just continue to support whatever Walks are locally given, and put our thinking caps back on the next time an
opportunity comes up for us to help!
For the August meeting, we had decided to meet at Ken & Vickie's house outside Fayetteville for a change of
scenery to "close out" the summer... Thanks again for their wonderful hospitality, for Vickie's dulcimer music! :)
and Ken's great, yummy, grilled chicken!!! We'll be meeting in September back at Western Sizzlin' on Monday,
the 10th. Hope to see you then!
Stop MS before it
Thanks for the visit!
Our October meeting was small but productive! Met a new friend, Marie from Fayetteville! And through her
suggestion, I'm going to start posting whatever information we can find on this page for affordable housing in the
area for the handicapped... when you have MS, sometimes it's not so easy to maneuver stairs or regular
bathrooms... this info might help to find alternatives!
In our discussions, we realize that it's very confusing as to exactly what the colors of MS are these days... so my
mission for next meeting: to get the definitive answer!
Such a lovely meeting we had! Surprised by Suzie and newcomer Pat, and returning "veteran" Marie!!!! Jane
and I were so happy to have you there!!!! Lots of great discussion and commiserations and laughs -- I know I
sure felt better! :) Anyway, we also decided a few other things as well:
If you will be attending, please give me a call at 931-455-3568 to give me a heads up! :) Thanks!
- We will continue in to have our meeting at the Western Sizzlin back room (as long as they'll have us!) ;)
- We will have a Holiday "Party" for our December meeting on Monday, December 10th! We hope to have
music, games and some MS trivia with prizes to be had! :) :) :) We're gonna make it fun!
- I'll be sending out info to all "members" but welcome any and all with MS to the fray!! That goes for MS
caregivers as well... we certainly know how much you go through sometimes too... if you need some
support -- we're here for you too!
Our "Holiday Party" meeting was lots of fun! With what has now become the new core of our membership, we
had a blast just yakking it up over lunch, catching up and talking about plans for the new year! Thanks to Jane,
Vicki, Ken, and Marie for keeping the faith! :)
We will be here for anyone with MS or who cares for someone with MS who needs a sounding board or just a
place to feel not so alone! Every 2nd Monday of every month...
All best wishes for a Happy and Healthy 2008! See you on Monday, January 14th!
The first meeting of the New Year was small but sweet! :) We not only discussed our respective holiday
experiences, but we decided that an MS fundraising event that our group might be able to handle is the "Stand
for MS" lemonade stand idea... :) I will be looking into the specifics for us.
A big welcome back to our founding member, Mr. Roy! So great to see him!!! We know he can't make it all the
time, so it was a nice surprise and a pleasure to have his company at our February meeting. And a wish for a
speedy recovery goes out to Ms. Jane... don't let the flu bug get you down, girl! We ate a bite of cobbler for ya!
Next meeting I hope to have more info on the lemonade "Stand for MS" and where we might be able to hold
those here in Tullahoma. Any ideas in that regard, please feel free to send me an email on the subject! :)
We hope to see Ms. Marie then and also any new members from the Dechard area that might want to drop by
(hint, hint) :) :) :) We will be meeting on Monday, March 10th (see Marie -- I got it right this time! :) :)
Our meeting for March was our "core four"! :) We decided to keep our eyes and ears open for opportunities in
the upcoming months for local events that might lend themselves to our having a "Stand for MS" lemonade
stand fundraiser event... any ideas in that regard, please don't hesitate to contact me.
We also agreed to have our April meeting "On the Mountain"! So the April meeting of the self-help group will be
held at Ken & Vicki's place in Mulberry, TN (outside Fayettsville). For more information please contact me. It
will be beautiful up on the mountainside in the Spring!!! And Ken says he'll be cooking pork tenderloin!!! Yum!
We had a great time the last time we held our meeting at our "annex"! It will be another relaxing and fun day
away! Come and join us!!
The April meeting at "the annex" :) was wonderful! Big thanks to Ken & Vicki for hosting us at their mountain
retreat of a beautiful home! The pork rotisserie was a dream, the fresh cole slaw was to die for, and the 5
minutes we ventured out onto the front porch -- tho' brisk -- was breathtaking! :) Thanks again!!
Next meeting will be same bat time, same bat channel -- back in Tullahoma at the Western Sizzlin', back room -
on Monday, May 12th. Hope to see you there!
WELL! It looks like I've been a little lax in my updates here!!!! I could have sworn!!!! I'd at LEAST done May... oh
well... time and things do get away from us, don't they??? :)
So sorry about that. But here's the scoop! Our July meeting went very well, with our core 3 ladies from the "study
group" (see May's notes coming up!) were in attendance and we had lots to talk about. Poor Jane suffered an
episode of mixing up her daytime and nighttime meds while she was alone and falling to the floor! She wasn't hurt
thank goodness, but was basically paralyzed on the floor for more than 2 hours, not being able to get help. Which
brings me to our discussion of Life Alert. In some cases, if you spend a lot of time alone, this may be something
you need. Here's the website where you can find more information: http://www.lifealert.net/home/home.html
I'll give you the highlights as best I can remember of our May and June meetings:
May -- Jane, Susie and I participated for 1 week in May gathering data for an MS study being done by a student at
MTSU. We had to wear pedometers and electrometers and write down our steps and if or when we used assisting
devices when we walked. It was easy enough, although we found the pedometers popping off our belts
sometimes... Anyway, we're hoping to hear about the study, and when it's ready, I'll make it available on this site.
Also in May, we followed up on our Stand Against MS lemonade stand fundraising idea. We received our 2 banners,
so we are more prepared to do something formally. However, it was decided that since there are just a couple of us,
and we would need to worry about table, chairs, possibly an umbrella, coolers, ice, cups, not to mention the
lemonade... that the output $$ would be formidable. We don't really have a budget to deal yet. Possibly later, or if a
situation presents itself where some of these things are taken care of, we could handle it. We'll keep our options
open, but for now --- it's on the back burner.
June -- We met some folks from Manchester, TN and hope we will be seeing more of them! Scott and Tina came to
our meeting since the Manchester group has disbanded. Both are Betaseron users, which is good to know, since
Vicki is our only member who uses Betaseron -- so now she's not so alone!!! :) For anyone out there in the
Manchester area... if you would like to attend our Tullahoma meeting, PLEASE DO! :) Consider this your personal
invitation to join our ranks!! Contact me by email at firstname.lastname@example.org or just come on by to one of our
meetings -- The 2nd Monday of every month, back room, Western Sizzlin', North Jackson Street, Tullahoma! We
look forward to meeting YOU!
Our August meeting was small but very good! We welcomed a new member, Jerry - and hope to see him from now on
as he's right here in Tullahoma!
Just a reminder - our meetings are open to anyone in the Tullahoma area -- but those of you in Manchester or any
other surrounding towns are welcome as well! We're here for you!! If you need to connect with other people who
know what you're going through, this is the place for you! Plus, there is absolutely no pressure here at all. We're here
for informational purposes, for vent sessions :) and to have a good time!! :) :) :) Which is what we all pretty much
need. AND if you need any specific MS information, and we don't have it on hand, we can get it for you! So come and
Our next meeting will be the 2nd Monday in September, which is Sept. 8th at 11AM at the Western Sizzlin' in
Tullahoma. You are welcome to just pop in and say hey! or contact me first if you would like, either by phone or by
email. I'm happy to help.
(Kathy Martin * 931-455-3568 * email@example.com)
09/08/08 - Ok. I know I said I'd be better about this... but sometimes the time just slips away... :( Sorry I haven't
updated in a while. But here's the scoop of September's meeting as best as I can remember it at this point! :)
As I recall, there were the 4 of us... me, Jane, Vicki & Ken. But we had a great meeting, and caught up -- talked
about a lot. Scott had arranged to meet me ahead of time to give me extra Betaseron that he had that I could give
to Vicki. See... this is why it's so great we can network and connect. Those shots are expensive! And if someone
has some that they either don't need or can't use anymore for whatever reason, and the meds are still good --
DON'T WASTE THEM! See if someone else can use them!!! Because chances are -- they can!
We came up with an easier way to do our "Lemonade Stand" idea, since none of use could face pulling out all the
tables & chairs and hauling ice and cups and coolers etc it would take to actually sell lemonade. If we pre-make little
attachments for bottled water, we can give out CrystalLite-type singles to make their own lemonade along with a little
logoed card. We charge $2. It's for the cause. It could work! :)
And then we ate! :) What else would we do?? October's meeting will be Monday the 13th! It will be a Halloween
theme... :) Boo! And, I have news from the MS-Learn-On-Line front! So... Please come and join us!
10/13/08 - We had a good meeting for October. I had anticipated two more members showing up than did... but our
core 4 had a good talk and went over the materials about Cognitive Thought. Anyone interested in taking a look at
the MS Learn On-Line course, I have it on CD. Let me know.
I was contacted by Meredith at the MidSouth Chapter, and in November, we will host a representative from Pfizer
and Dr. Raymond Capps, a neurologist from Tullahoma. (see the flyer below) Please join us for our November
meeting. Here is a great opportunity to have your questions answered by an expert!
11/10/08 - Dr. Raymond Capps and Reps from Pfizer and the Midsouth Chapter came to visit... we were greatly
appreciative of their gracious expertise! Dr. Capps gave us a wonderful computerized presentation and patiently
answered all our questions. If YOU had been there, he would have answered YOUR questions too! :) See what you
missed? Dr. Capps said he would be happy to come back any time and give us another presentation, so you may
have another chance in the coming months... don't pass us the opportunity to get your information straight from an
December meeting will be on Monday, December 8th, 2008. Ornaments may be involved... :)
Here is where you can read past meeting minutes... a way to free up the main page! :)
Click on HOPE to go back to the main
MS Support Page
02/09/09 - Ok - Ok - I'm a little late in updating this page!!! I'm very sorry about that. But we have had some good
meetings, albeit small meetings -- and we've met some new people, so we're still hanging in there! :)
December was good in that we had a little holiday "party" as it were for those who attended.
January was great in that we met a new member from right here in Tullahoma. She asked us about LDN (low dose
netraxone), which turns out is a treatment in tandem with your normal shot treatment. Ask your doctor if you are
wondering if it would be beneficial for you. Ken, Vicki and I went to the Annual Meeting in Brentwood at the end of the
month and asked the question of Dr. Moses, who was one of the speakers. Our information had been that you could
only take LDN if you were taking Copaxone. However, Dr. Moses is treating patients on other meds as well. So ask
your doctor if it might help you.
February was just me and Vicki and Ken... we had fun with the Valentines!!! ;)
We will hold our March meeting on Monday, March 9th. We haven't decided yet where we will have the meeting. Ken
and Vicki have graciously invited us to their house again this year. We jokingly refer to it as our meeting annex! :)
But we will make a decision soon as to where March's meeting will be, and I will post the meeting place here on the site.
If we go to Mulberry, we'll arrange either a ride or a convoy! :) Thanks, and hope to see you soon! :) :) :)
03/09/09 - We had our first meeting at Boone's Buffet and Grille.... looks like this will be our new meeting place, at
least for a little while until we can decide where else to meet, since Western Sizzlin has now closed it's doors... We
had a great meeting, and got to see Roy, who we all agree is looking very healthy and well since last we got to see
him!!! :) Thanks to all who came out for the meeting!!!
Update on our lady Jane: She's out of the hospital and doing much better, but still not out of the woods. She's
recouperating at home with family and friends and it's going to be at least another 4 or 5 weeks until they know how
things are looking... but she got the "fishes" card, and thought it was really sweet and it gave her a chuckle! :) She
sends her best to the group and her thanks!
Our next meeting will be at Boone's on Monday, April 13th. Hope to see you there!
04/13/09 - We decided to try Ming's Buffet for our next meeting... still not too set/sold on Boone's... any other
suggestions for meeting places would be appreciated!
Update on Jane: She's doing much better, is home from the hospital, but still needing to take it very easy and hasn't
been able to attend meetings as of yet. But she sends her best... and so do we!!!!
5/11/09 - We have found our new permanent meeting place!!! :) MING'S BUFFET! Our meeting there in May
went great... the food was excellent, plenty to choose from, not just Chinese, American too, AND, the price was
right! The buffet with water to drink, $6.60 with tax! Don't think you can beat that with a stick!!! We were very
I brought a term to the meeting that I was interested to find out was not known to any of us ---- palliative care.
Palliative Care is the treatment of a patient to allieviate symptoms without curing the illness. Since this pretty
much defines MS, especially in the later stages of the disease, this was interesting information. If anyone is
interested in finding out more about palliative care, I have the link to the web site here, and will keep it in our
"helpful links" below for future reference.
This is the site with links for Palliative Care Resources, Quick Facts, a video, and a State-by-State Report Card
on palliative care facilities. When it's time for you to think about getting this kind of care, this could be a valuable
So now that we've found our place to "play", we'll see you next month, Monday June 8th, 11AM at MING'S!
(Jane says hello, and plans to be there in June! ; )
6/8/09 - We had a VERY good meeting, since we were able to welcome back our good friend Jane! :) And we
also got to see Gerald again... and we had some great conversation and commisserating! :)
We're hoping to see more of you come to the meetings, but we understand that it's summer -- vacations and all.
We just want you to know that we are here if you need us, or just want to come and laugh and have a good meal!
Next meeting is July 14th at MING's. See you there!
9/14/09 - Ok - so - I suck at this minutes stuff!!! :) I see it's been awhile for updates here. But the last 2 meetings
were the same: Me and Jane. And July's meeting was GREAT, as we got to meet Ken & Vicki's mom!! :)
Jane and I have been holding down the fort in these last summer months -- but we're hoping to see you all back real
soon!! Come and join us for the newest bits of news from the Society and anywhere else I can find... and of course,
the good eats!! :)
Next meeting will be October 12th! See you then!!!
10/12/09 - A great meeting in October! Ken & Vicki are back from their travels, and Jane and I made a foursome!
We discussed the newest headlines from the Society, and also reiterated the best things we can do to try to stay
healthy this flu season! Two words: Hand Sanitizer! I've been bringing give aways the last two meetings, and now
with H1N1, look forward to more Hand Sanitizer favors!!
Next meeting is Monday, November 9th. We hope to meet out newest members from Manchester, Angela Paras and
Stephen Ray! :) Come on out and join in the Fall fun! Thanks!
01/08/2010 --- Ok, Ok! I resolve to be better at this! :) Happy New Year everyone!!! Our November and December
meetings went very nicely, thank you very much. We are pleased as punch to welcome Stephen and Rose Ray to
our monthly "band of brothers" so to speak!
SORRY!!!! WE HAVE TO CANCEL THE JANUARY MEETING -- DUE TO SNOW & ICE IN MULBERRY.
Next meeting will be in February back at MING's in Tullahoma.
05/05/10 - Well - thought all was taken care of and Meredith was coming down from Nashville to run the meeting in
May with Pfizer and Mr. Capps... but now that the flooding has done it's thing in the area, Pfizer has decided to
cancel altogether for May and try to reschedule in July. Soooo, with me still on the mend, we'll just go ahead and
cancel this month's meeting :( :( :(. I will let you guys know what we'll do for June in a couple weeks.
Hope everyone fared well through the floods and storms. If anyone needs any assistance from the group or from the
MS community, please let us know. Even though I'm slowed down right now ---- I still have my email! :) I can shoot a
note to the appropriate people at MidSouth and see if we can help you out! Don't hesitate!!! Stay safe and healthy!
05/24/10 - Our June meeting will be at Mings on Monday, June 14th at 11am. Dr. Capps will be there, sponsored
by Pfizer and MSLifelines. I expect to be there to host. :) I hope you will spread the word and invite your friends to
attend. I haven't heard back from Meredith yet, but the last time, MSLifelines sent out a flyer with pre-registration
info, so I will look for that and let you know as soon as I find out anything. In the meantime, please plan to attend
and bring your friends and any questions you might have in regard to relaspsing/remitting MS. After talking with
most of you, I know we've ALL been having exacerbations in the last few weeks and months, so I think we will all
have something to contribute to the discussions! :)
October 2010 -- Ok, so, I've been a little lax at the updates. :( Sorry about that... we've been meeting at Ming's
every month... even had the meeting with Dr. Capps - very informative - and some of the meetings have dwindled
to our staunch members... but hoping November and December we might see more of you! Our November
meeting is on Monday the 8th -- we'll decide at that meeting what we want to do for our December "holiday"
meeting. Hope to see some on you there!!!
December 2010 - Alright, alright --- I'm a baaaaad self help group leader! :) I've just been really crazy lately with this
and that and if I told you it would just sound like whining --- and I really don't like to whine.... :) So suffice it to say - I
November meeting went well, tho' we were just three... but we decided that even 3 of us can have a productive and fun
meeting! So you all don't know what you're missing! :) Plus - Don't you even wonder what the table will look like
next??? :) :) :)
December meeting will be on the 13th - George McNeil has graciously consented to visit us from Murfreesboro to speak
and discuss with us the Medicare options MS patients have with the new insurance policies. He'll answer any questions
you may have regarding pre-existing conditions and the like. It will prove to be very informative. AND -- we'll have a
little holiday merriment to boot! Hope you can join us! Steven and Rose, we'd love to see you - but if you can't make it
- we understand!
To all our members and to anyone out there who might not be able to get around at this time of year --- help is a phone
call away. Of course - I CAN'T DRIVE ANYMORE EITHER - :) - but I can make a call!!! Do celebrate your holiday
season in a way that gets you MOVING!!!!! :) :) :) Even if it's to the front porch! And know you are never alone!
Have a Merry Christmas! And God Bless Us, Everyone!
Here's Jane and Ken and Vicki from one of our meetings at the Western Sizzlin'... the
beginning of our photo album for the Tullahoma Self Help Group! :) :) :) Let's get some
So glad our Jane girl is doing much better!
Here's Stephen from
his pic in the
Our new famous
We really miss our Stephen and Rose... but Stephen had to start working days so we don't see them for the meetings anymore... but we think
about them often and wish them well. And we are SO proud of "our boy". (Well, he WAS the youngest one of the bunch!) He has drawn so
much awareness to the cause. We're so happy that he's doing well. We wanted to extend our wish for a Merry Christmas to Mr. & Mrs. Ray.
|I tried really hard to scan and put the AMAZING article from the Tullahoma paper about Stephen's phenomenal
success in the 150-mile "Bike to Jack & Back" MS ride in October here, but I just couldn't get it to work.
I am a dismal excuse for a computer operator!
Hope you caught it. And hopefully I'll figure this out and be able to post it soon!
Congratulations, Stephen! My sister wants a copy to send to Lance Armstrong!!!!! :) :) :)
February 2011 - George McNeil of Caring Insurance from Murfreesboro was our guest speaker. He talked to us about
insurance options for MS patients and answered our questions about pre-existing conditions. If you have any insurance
problems or questions, give George a call! He's more than willing to help fellow MSer's!!! :)
It was so nice to meet you, George!
At our March meeting, we are expecting a visit from our local neurology expert, Dr. Raymond Capps. If you can make the
March 14th meeting, there will be lots of information to share!
March 2011 - We had an AMAZING meeting on our Monday in March! I think there were 15 of us! And for a group that's
used to 3 - 5 - 7 or 8 at the most, this was unprecedented! :) Dr. Capps was on hand to speak and answer everyone's
questions, sponsored by our Pfizer representative, Kenneth Williams. A huge thanks to Meredith Kear of Mid-South NMSS
for being there and for sending out the fliers! We not only had folks from Tullahoma attend, but Shelbyville, Winchester,
and Goodletsville, to name a few! AND, MS Ambassadors Carrie Smith and her caregiver husband -- who are extraordinarily
talented musicians -- performed for us!!!!!!! You really missed a great meeting if you missed this one!
January 2011 - we had to cancel due to weather. It's always better to err on the side of caution... we have MS -- we don't
need any broken bones from slipping on icy sidewalks!
April through November 2011 -- We have had extremely small meetings these months, including having to cancel due to
weather. I'm hoping to see many of you at the December meeting to get some updates on people's status, and to celebrate
the holidays.... Monday, December 12th at MING'S at 11AM. Please come and join us!
Looking forward to our December get together on Monday, December 12h at MING's at 11AM. I have handouts from
Mid-South entitled "Minimizing Your Risk of Falls - A Guide for People with MS". Hope to see you there to celebrate the
season! :) :) :) Merry, Merry!!
This is a pic from our June 2011 meeting at Ming's.
Jerry, Pat, Ken, Kathy and Vicki.
A small but committed group! :)
December 2011 - We had a nice meeting for our holiday get together. Hope to see everyone in January on Monday the 9th.
I'd love to get your ideas on what you'd like to discuss in upcoming meetings. Let me know your suggestions!
HAPPY NEW YEAR!
Up through March, 2012 -- meetings have been great, tho' small! We'd love to see more of you there!
We had an opportunity through Phil Nixon and Bayer to meet Dr. Samuel Hunter on April 3rd at a dinner meeting at Damron's in
Tullahoma. Lots of great shared info, and he made us aware of a trial to research pain in MS patients. Dr. Hunter was very generous
with his time and expertise and offered to do it again later in the year! Watch for when we'll get the next chance to "pick his brain".
But meantime, if you'd like to get more information, check out the following websites: www.neuronexus.org or www.neurosci.us
Don't forget us at MING's every 2nd Monday of every month! Next meeting: April 9th, 11AM
04/09/12 -- We had a very nice April meeting, discussing the info learned at the dinner meeting with Dr. Hunter and touching base
on the news from NMSS. Though it was just a few of us, we still had a great time catching up with everyone and basically having a
good time! Hope to see more of you in May! We'll be meeting the 2nd Monday, May 14th, at MING's (our favorite place!) We'll be
looking forward to seeing our newest member then, Karen. :) :) :)
May & June, 2012 -- Due to summer schedules and illnesses the meetings for May and June were cancelled. Hope everyone is
hanging in and dealing with the summer heat!! Our next meeting: Monday, July 9th at Ming's. Hope to see you there!!!
July 2012 - We had a nice meeting in July and caught up with everyone after being gone for a couple months. Ken and Vicki are
doing well and we wish them a good trip to Memphis (visiting the family), and Susie brought her husband Dwight! So nice to see
him. I let everyone know that I checked in on our Ms. Jane and she's doing well, tho' still can't make it to the meetings.
I've posted a link (see below on this page) for the newest cane on the market! Check it out!!
Our August meeting will be on Monday, August 9th at 11AM. Hope to see you all there!
August through November, 2012 -- Yea, yea, I know... I'm SOOOOO behind in the updates! :) We've had good meetings each
month - small but fun. Tho' we've tried to make sure there is a specific topic for each meeting, we get more out of just catching up
with each other! Checking out how everyone is faring and keeping up to date on the latest MS news. If you want to join us,
please just show up at our meetings. We'd love to meet you! :) Our next meeting is Monday, December 10th at Ming's! Hope to
see you there!
Yeah, so, I've been really BAD at keeping notes this year. What can I say.... although there WERE actually a few months I was out of
commission due to website software difficulties -- I pretty much have the same thing to report each month -- for those of us who show
up, we have a very nice catch up on how we're doing a great discussion on the "MS News" items I bring to share, and a really good
lunch! All are welcome!
July -- It was just Susie and I this month... Vicki and Ken are traveling, and we didn't hear from anyone else. But it only takes two to
have an absolutely wonderful time! Hope to see more of you in August -- have some great handout materials from Mid-South to share
January through June ---- our small core group met monthly at Ming's to share symptom sagas and daily trials and tribulations.
Last meeting in June was just Susie and me but we had a lot to share and had a great meeting!
I will miss every one, and wish you all the very best. Make sure to contact the Mid-South chapter for future info on self help in