Judy's Notes

This information comes from Cindy Cosby. The Parkinson Group has exercise programs to which the MSVP has been invited. The leader of the group Gary is so full of energy and has such a tremendous positive attitude--it is contagious. Cindy has been to several sessions. She sometimes does the exercises sitting at the table but sometimes she stands and does them -- they are great. Gary wants to invite as many of our MS group that would like to come. He will be doing an hour of exercise to music--again all can be done sitting-which will be followed by an informational session. We can leave after the exercise portion. They will meet the 2,3,and 4 Wednesdays of each month at 11:45-2:00 at Bridgeport Recreation Center. Gary leads another class that meets Sunday at Laurel Manor from 1:30 - 3:30. That is one hour of exercise to music first and then a time of group discussion. On Mondays, Guys only --"Gary's Guys" meet at Chatham from 9:00 - 11:00 for coffee and donuts again beginning with an hour of exercise.

September 20-- 10:00 at La Hacienda Recreation Center: Meeting about Lasers in the treatment of MS.

September 22-11:30, registration; 12:00 Program. Carrabba's Italian Grill, Near Florida Mall, 1001 Sand Lake Rd., Orlando, 32809.

Jason Norwood, RN MSCN and MS lifelines Ambassador Debbie will talk about relapsing remitting MS in an open dialogue and will consist of 2 distinct discussions: general MS information followed by a discussion about a relapsing MS therapy option. Lunch and speakers are sponsored by EMD Serono, makers of Rebif. Lunch will be provided.

September 28-11:30-1:30 Lance Kim D. O. will speak at the Cuvee Wine and Bistro, 2237 SW 19th Ave Road, Ocala, FL 34471. Living well with MS: Your Quality of Life Counts. An inspirational story will be told by an MS advocate Complimentary lunch and parking sponsored by Biogen. RSVP 1-866-955-9999 or visit www.MSActiveSourceEvents.com

October 11-Bowling I hope they allow us to bowl at 10:00 but they may change it back to 9:30. Lunch to follow. Reservations are not needed.

October 18-NOTE TIME CHANGE-11:00-1:00 to accommodate Dr. Gaudier's schedule. Mindy, his new MS nurse practitioner will accompany Dr. Gaudier. The subject is Gilenya, the only oral disease-modifying treatment currently on the market. Lisa Schaumberg, Novartis representative, isi bringing box lunches for everyone! I will distribute sing-up sheets at the September meeting for a head count.

If you cannot attend the September meeting, please contact Mary at pagrune@hotmail.com or me at jheath@thevillages.net to RSVP. I don't know whether Lisa plans to give us a menu from which to choose or whether she will bring a selection and each person grabs one on the way to their seat. Bring your general MS questions for Dr. G. and Mindy.

October 22--Seminar at Carrabba's in Orlando will be "A to ZZZZZZs of MS and Sleep, RSVP to 1-877-329-8327. They are full but are taking a waiting list. October 25-10:30 Caregivers meeting (see above).

November 1--Luncheon at 11:15 at Glenview Country Club. RSVP (see above)

December 6--Annual Holiday Party at Nancy Lopez Country Club. We will select from a menu
ahead of time. Kathy asks us to bring an unwrapped toy or cash donation for Toys for Tots. RSVP (see above).

Medicare Enrollment for 2012 which usually ends on December 31st will run from 10/15/2011 to 12/7/2011. We will have a speaker from SHINE at our November meeting to talk about options and help those who would like an individual assessment of their needs. Bring lists of all medications including over-the-counter medications and supplements.

Therapeutic Horseback Riding-will begin the first week in October. I expect we will ride on Friday mornings. For three years we have been fortunate to have available 10-week sessions starting in February and October. All riding has been funded by a private source through MSF. There are ten slots available for each ten-week session to be shared between our group and the Ocala group and we have not been able to fill the slots. Francee and I have done 5 sessions and have enjoyed every minute. I am not able to ride anymore for medical reasons. I will miss the experience. When I was riding my legs were stronger than they had been in years.

If you would like to ride, visit www.MTRAocala.org, click on forms, fill out an application and a medical form signed by a doctor and mail it in asap. The start date is only 3 weeks away.

MTRA can always use donations. $15 buys a bale of hay. If you would like to donate, the address is 6850 SE 41st Court, Ocala, FL 34480 ____________________________________________

From The Daily Sun, Monday September 12, 2011. The Villages Theater Company which often invites us to their dress rehearsals at no charge is opening a performance to all Villagers. The performance is scheduled from 11:-1:00 starting with a small business meeting for the group, refreshments will be served and the Shows to Go entertainment Troup will launch into the entertainment, a preview of "Faces of Christmas" which will be performed in its entirety November 26 at Church on the Square.

For more information, call Roger Hickok at 430-7137, Use this number. The number in the paper is wrong.

I just had some things done for my computer. He was the most knowledgeable I have dealt with.
Pete's PC Service

Next time when you go to the store, buy several bottles of the newer crystal aspirin... put one in your purse, night stand, medicine chest, car glove box, wrap two aspirin in saran wrap and put in your wallet, any place you can think of and read the rest of this e-mail. This is good information. We did not know that you should not lie down while waiting for the EMT to arrive.

Just a reminder to all: purchase a box, keep one in your car, pocketbook, wallet, bedside, etc.

Something that we can do to help ourselves. Nice to know. Bayer is making crystal aspirin to dissolve under the tongue. They work much faster than the tablets.

About Heart Attacks: There are other symptoms of a heart attack besides the pain on the left arm.

One must also be aware of an intense pain on the chin, as well as nausea and lots of sweating, however these symptoms may also occur less frequently.

Note: There may be no pain in the chest during a heart attack. The majority of people (about 60%) who had a heart attack during their sleep, did not wake up. However, if it occurs, the chest pain may wake you up from your deep sleep. If that happens, immediately dissolve two aspirins in your mouth and swallow them with a bit of water.

Afterwards: Call 911- say "heart attack!", - say "I have taken 2 aspirin".- phone a neighbor or a family member who lives very close by.

- take a seat on a chair or sofa near the front door, and wait for their arrival and... And above all... Do Not lie down!

My MS ManagerTM is MSAA's new mobile phone application, provided free of charge to individuals with multiple sclerosis or their care partner to use on their iPhone, iPad or iPod touch.

This is first-of-its-kind app for MS offers individuals a convenient and effective tool to manage the ever-changing course of the disease.

. Descriptions of MS flare-ups, tracking their duration, frequency and intensity

My MS Manager is now available in the Apple App Store* and can be accessed by visiting wwww.msassociation.org/mymsmanager

Download MSAA's My MS Manager app for your mobile device *Currently, My MS ManagerTM is only available on the Apple mobile platform. MSAA is hopeful that this application will be available to Android and Blackberry mobile users in the the near future.

This is an interesting article about stem-cell therapy at Cleveland Clinic. The article was was sent to us by John and Gail Simonetti.

This is a very popular half and full marathon at Disney World in January. It is usually booked a year in advance, but certain charities hold slots for their runners.

Make your personal achievement of running a long-distance race even more memorable by helping those who live with the unpredictable challenges of multiple sclerosis.

Charity entries are now available with the National MS Society Mid Florida Chapter for the following

People with Multiple Sclerosis know something about moving that most of us don't understand- moving is not a guarantee. The National MS Society is addressing the challenges of living with MS by proving quality programs and services to those living with MS. By participating, you will help to raise critical funds that support innovative research and local programming aimed at helping people with multiple sclerosis move their lives forward.

A friend went to the local gym and placed his belongings in the locker. After the workout and a shower, he came out, saw the locker open, and thought to himself, 'Funny, I thought I locked the locker...

Hmm, 'He dressed and just flipped the wallet to make sure all was in order. Everything looked okay - all cards were in place... A few weeks later his credit card bill came - a whooping bill of $14,000! He called the credit card company and started yelling at them, saying that he did not make the transactions.

Customer care personnel verified that there was no mistake in the system and asked if his card had been stolen... 'No,' he said, but then took out his wallet, pulled out the credit card, and yep you guessed it - a switch had been made. An expired similar credit card from the same bank was in the wallet.

The thief broke into his locker at the gym and switched cards. Verdict: The credit card issuer said since he did not report the card missing earlier he would have to pay the amount owed to them.

How much did he have to pay for items he did not buy? $9,000! Why were there no calls made to verify the amount swiped? Small amounts rarely trigger a 'warning bell' with some credit card companies.

July--Nancy Engle-Shrank is a physical therapist with 30 years experience treating those with neurological diagnoses. She does home care and has recently joined Gentiva, a home health-care agency with a local facility in Ocala. A representative from Gentiva will talk about their services.

August--Jason Ambrose from Questcor will speak on Acthar which is an alternative to steroids for treatment of MS exacerbations.

I may be out of town from June 16-23. We don’t have definite plans so I will let you know. Mary will be in town at that time and will conduct the June meeting

Bowling time has been changed permanently to 10:00. The later time was requested by some of our members who find the earlier time difficult. We must be finished by 12:00 which shouldn’t be a problem.

June 7—11:00 Note time change! We will have lunch at Panera’s at Lake Sumter Landing. RSVP to kathysunset@embarqmail.com or 751-0207.

June 14—10:00 Note time change! Almost everyone can bowl using ramps, bumpers, etc. Come join us for bowling or come to cheer for us. We go to lunch at a nearby restaurant after bowling. Reservations are not needed.

June 21—10:00 Meeting at La Hacienda Recreation Center. Our speaker will be Shari Hamnik, Neurologist, who will open the Neurology Center of Excellence PLLC across from the Waterfront Inn at Lake Sumter Landing.

The success of our Walk and fundraisers depends on the generous donations of breakfast items for the walk and gift certificates which we use as prizes at the mah jongg tournament and for our “Wheel of Hope”. Each of sponsor receives a hand-delivered request for a donation and a hand-delivered thank-you letter with a handsome framed ‘Certificate of Appreciation’. This takes more time than mailing letters but we want our sponsors to understand how much their support means to our fundraising effort. We have seen these certificates proudly displayed in some area businesses, for example Urban Hair Studio, Gator’s Dockside and Ay Jalisco. When you see a frame, you could mention that you appreciate their support.

New Hope Trials involve extracting an enzyme from jellyfish for use in the treatment of MS, peripheral neuropathy and other auto-immune disorders. They are accepting applicants for their beginning MS study. There is also an on-going intermediate MS study. If you are interested the web site is www.hopetrial.com.

This from Joe is the story of a woman who had CCSVI of the veins behind her ears and her abdomen. Her walking improved. This is the first time have heard of opening veins in areas other than the neck. www.tillsonburgnews.com/ArticleDisplay.aspx?e=3071570.

Next time you go to the store, buy several bottles of the newer crystal aspirin... put one in your purse, night stand, medicine chest, car glove box, wrap two aspirin in saran wrap and put in your wallet, any place you can think of and read the rest of this e-mail. This is good information. We did not know that you should not lie down while waiting for the EMT to arrive.

Just a reminder to all: purchase a box, keep one in your car, pocketbook, wallet, bedside, etc. Something that we can do to help ourselves. Nice to know. Bayer is making crystal aspirin to dissolve under the tongue. They work much faster than the tablets.

Why keep aspirin by your bedside?

About Heart Attacks: There are other symptoms of a heart attack besides the pain on the left arm. One must also be aware of an intense pain on the chin, as well as nausea and lots of sweating, however these symptoms may also occur less frequently.

Note: There may be no pain in the chest during a heart attack. The majority of people (about 60%) who had a heart attack during their sleep, did not wake up. However, if it occurs, the chest pain may wake you up from your deep sleep. If that happens, immediately dissolve two aspirins in your mouth and swallow them with a bit of water.

Afterwards: Call 911- say "heart attack!", - say "I have taken 2 aspirin".- phone a neighbor or a family member who lives very close by.
- take a seat on a chair or sofa near the front door, and wait for their arrival and... And above all... Do Not lie down!

A Cardiologist has stated that, if each person, after receiving this e-mail, sends it to 10 people, the probability of saving someone's life increases dramatically! By all means do forward this message.

Just wanted to let everyone know, in case you hadn't read about it. If you have a friend or loved one in Leesburg Hospital or The Villages hospital you can send them a get well card over the internet. You pick the card and add your message then click send it. They will print it out at the hospital and deliver it to the patient. I have a friend in the hospital now so sent a card to see if it works and it did. They don't give an actual card. What they do is print it on a regular sheet of paper and deliver it. Great idea, long time coming. Go to www.cfhalliance.org then click on "Send a Cheer Card" link on the homepage and just follow the directions.

Our monthly meeting will be held Tuesday at 10:00 at La Hacienda Recreation Center. We have some changes to our schedule. As planned Steve Berkovitz will speak on available transportation within Lake, Sumter and Marion Counties, the cost and reciprocity, where available. State Representative Marlene O'Toole will not be able to join us, as we had hoped, because she was called to Tallahassee for committee meetings prior to the official start of the legislative session.

After Steve speaks Joe will do a follow up on Saturday's seminar. Joe has received several phone calls asking about the path to having a CCSVI. He will speak on these issues and provide contact information.

Tickets are available for the Mary Jo Vitale and Dave Worker concert which will be held February 3rd at 7:00 at Church on the Square. This will be a memorable performance and it is the first fund- raiser of the WalkMs 2011 program. Tickets are available through the Villages Box Office. $12 and $10 in advance, $15 at the door.

The following is from Dr. Kantor. Additional information from him regarding clinical trials appears later in this newsletter.

- Triad Alcohol Swabs have been recalled -- do NOT use the alcohol swabs that came with your MS disease modifying drugs unless they are "BD" or "Kendall (Tyco)"

To follow this important update, please visit our Facebook and Twitter accounts and Blogs.

Cleaning for a Reason
If you know any woman currently undergoing chemotherapy, please pass the word to her or her family that there is a cleaning service that provides FREE housecleaning - once per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service. This organization serves the entire USA and currently has 547 partners to help these women. It's our job to pass the word and let them know that there are people out there that care.
Be a blessing to someone and pass this information along. http://www.cleaningforareason.org/ You may not know someone going through chemotherapy, but someone on your email list might.

Jan 25—Caregivers meeting—10:30 La Hacienda Center. Those with MS may not attend.

Feb 1—11:30 Luncheon Horse and Hound Restaurant 4620 E. Silver Springs Road, Ocala

**Feb 3—7:00 at Church on the Square--Concert featuring Mary Jo Vitale, Soprano and Dave Worker, Tenor sponsored by Lake Advisory Group to benefit the National MS Society. Tickets are available at the Box Office $12 and $10, $15 at the door. Last year was a sold-out performance.

Feb 22—10:30 La Hacienda Center Caregivers Meeting. Those with MS May not attend.

**Feb 26—9:15: Registration for Mahjongg Tournament at the Bridgeport Recreation Center. Play 10:00-3:00

***March 8—9:15 Bowling at Spanish Springs Lanes. We go to lunch after bowling

March 15—Meeting at La Hacienda Center. John Simonetti will speak on NMSS’ support of research studies.

This is additional information from Dr. Kantor regarding the research projects that he is doing. He also has more than 100 Town Hall Meetings on the Web on various subjects related to MS

- Neurologique and Dr. Kantor are now accepting BCBS, Medicaid and Tricare (Prime, Standard and For Life)

- CMTT (Chronic Migraine Treatment Trial) was stopped early because there did not seem to be a benefit of adding PROPRANOLOL to TOPAMAX vs. TOPAMAX alone.

- Past MS Town Hall meetings are recorded on web TV and Youtube

RESEARCH:

** More research trials have started. **

Neurologique continues to open new research trials that involve the entire community of neurologists and patients.

We are actively enrolling in multiple new clinical trials:

(1) GALA -- Copaxone three times a week (NOT daily) vs. placebo.
(2) ADVANCE -- comparing monthly or every 2 week pegylated interferon to placebo in RRMS.
(3) NIH trial for Deep Brain Stimulation (DBS) for MS tremor

(1) Mastinib -- a trial for patients with progressive form of MS! (Finally)
(2) Ampyra 5 mg -- a trial of a lower dose of Ampyra to help with gait dysfunction (see Dr. Kantor's article in MSFocus)
(3) TOPPLE -- a trial written by Dr. Kantor for patients who are going on Tysabri and have MS pain

Blood Studies:
(1) We are also thrilled to be the latest and only non-University site for the UCSF MS Genetic Susceptibility Project -- basically, everyone with MS can undergo a blood draw, which will help with the worldwide search for the genetic basis of MS.
(2) STRATIFY-2 -- A single blood vial to tell you if you have ever been exposed to the JC virus (the one that causes PML or progressive multifocal leukoencephalopathy)/ This is important because it helps the MS community, even if you are personally not on Tysabri.

We are in various stages of getting approval for many other research studies -- including oral medications, monthly medications, symptom trials etc ....

Stay tuned as the trials get approval and start recruiting -- you can visit www.neurologique.org and go to the Research tab.

All research is FREE.
ADVOCACY:
M*STAR (Multiple Sclerosis Team Approach Rule) ~~ M*S*P*N* (Multiple Sclerosis Patient Network)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
SAFETY * HEALTH * EDUCATION

MS is simply the flagship of how neurological diagnoses can help the individual and the community -- please get involved whether you have MS specifically or not.

Bowling-- at Spanish Springs Lanes Tuesday 9:15 with lunch to follow. No reservations are needed. See you there!

Concert tickets go on sale--Tickets for the Mary Jo Vitale and Dave Worker Concert scheduled for Thursday February 3^rd will go on sale Wednesday December 15^th at The Villages Box Office. If you need accessible seating, contact Steve B. at 751-3999 or steve@sberk.com. Tickets are $12 and $10, $15 at the door.

MTRA is taking reservations for the upcoming class which will begin in February. To register go online to MTRAocala.org. Then fill out the application form and have your doctor sign the medical form. The class is filling quickly. They have funding for up to 10 riders.

Silver Saddles—Marion Therapeutic Riding Association (MTRA) is planning a class for those over 60 who would like to ride and do not have MS. Perhaps you enjoyed riding as a child or have never ridden, but would like to try. They encourage all ability levels to join—from never-evers to the more experienced. It is great fun and exercise. Classes will begin in February. Ten (10) sessions will be $200. This is a great price.

Looking for a buyer--A fellow Villager contacted me last week about selling a 2001 Caravan with a rear drive-on lift and chair. Her husband needed the van because of knee problems which have been repaired and no longer needs an accessible vehicle. They would like to sell the van and buy another car. --. Asking $8,000, neg. Carol Ammons 674-9189

Dec 14 - 9:15 Bowling (see above)

Dec 28 - 10:30 Caregivers meeting

Jan 4 - 11:30 Lunch at Bob Evans on Rt 466.

Jan 11 - Bowling (see above)

Jan 18 - 10:00 Meeting. Steve Berkovitz will speak on transportation within Marion, Lake and Sumter Counties. We have invited Marlene O’Toole, State Rep. to join us for the discussion. (Issues like if you are in Marion County you can get a ride to a doctor or hospital in Marion County but not to a local doctor or to The Villages Hospital)

January 25 - 10:30 Caregivers Meeting

Feb1 - 11:30 Luncheon at Horse and Hound Restaurant, 4620 E. Silver Springs Blvd

April Seminar - Motivational speaker sponsored by TevaPharm in lieu of reg. meeting

May Meeting - Ride-Away will bring vans and talk about latest adaptations for accessible vans.

Everyone should take 5 minutes to read this. It may save your life or a loved one's life.

1. Tip from Tae Kwon Do :
The elbow is the strongest point on your body.
If you are close enough to use it, do!

2. Learned this from a tourist guide.
If a robber asks for your wallet and/or purse,
DO NOT HAND IT TO HIM.
Toss it away from you...
Chances are that he is more interested
in your wallet and/or purse than you,
and he will go for the wallet/purse.
RUN LIKE MAD IN THE OTHER DIRECTION!

3. If you are ever thrown into the trunk of a car, kick out the back tail lights and stick your arm out the hole and start waving like crazy.. The driver won't see you, but everybody else will. This has saved lives.

4. Women have a tendency to get into their cars after shopping, eating, working, etc., and just sit doing their cheque book, or making a list, etc.
DON'T DO THIS!
The predator will be watching you, and this is the perfect opportunity for him to get in on the passenger side, put a gun to your head, and tell you where to go.
AS SOON AS YOU GET INTO YOUR CAR ,
LOCK THE DOORS AND LEAVE...
If someone is in the car with a gun to your head
DO NOT DRIVE OFF,
Repeat:
DO NOT DRIVE OFF!
Instead gun the engine and speed into anything, wrecking the car. Your Air Bag will save you. If the person is in the back seat they will get the worst of it .
As soon as the car crashes bail out and run. It is better than having them find your body in a remote location.

5. A few notes about getting into your car in a parking lot, or parking garage:
A.) Be aware: look around you, look into your car, at the passenger side floor , and in the back seat.
B.) If you are parked next to a big van, enter your car from the passenger door.
Most serial killers attack their victims by pulling them into their vans while the women are attempting to get into their cars.
C.) Look at the car parked on the driver's side of your vehicle, and the passenger side... If a male is sitting alone in the seat nearest your car, you may want to walk back into the mall, or work, and get a guard/policeman to walk you back out.
IT IS ALWAYS BETTER TO BE SAFE THAN SORRY. (And better paranoid than dead.)

6. ALWAYS take the elevator instead of the stairs. Stairwells are horrible places to be alone and the perfect crime spot. This is especially true at NIGHT!)

7. If the predator has a gun and you are not under his control, ALWAYS RUN!
The predator will only hit you (a running target) 4 in 100 times; and even then, it most likely WILL NOT be a vital organ. RUN, Preferably in a zig -zag pattern!

8. As women, we are always trying to be sympathetic: STOP It may get you raped, or killed. Ted Bundy, the serial killer, was a good-looking, well educated man, who ALWAYS played on the sympathies of unsuspecting women. He walked with a cane, or a limp, and often asked 'for help' into his vehicle or with his vehicle, which is when he abducted
his next victim.

9. Another Safety Point: Someone just told me that her friend heard a crying baby on her porch the night before last, and she called the police because it was late and she thought it was weird... The police told her 'Whatever you do, DO NOT open the door...' The lady then said that it sounded like the baby had crawled near a window, and she was worried that it would crawl to the street and get run over. The policeman said, 'We already have a unit on the way, whatever you do, DO NOT open the door.' He told her that they think a serial killer has a baby's cry recorded and uses it to coax women out of their homes thinking that someone dropped off a baby... He said they have not verified it, but have had several calls by women saying that they hear baby's cries outside their doors
when they're home alone at night.

10. Water scam! If you wake up in the middle of the night to hear all your taps outside running or what you think is a burst pipe, DO NOT GO OUT TO INVESTIGATE! These people turn on all your outside taps full ball so that you will go out to investigate and then attack. Stay alert, keep safe, and look out for your neighbors!

Just wanted to pass on some information to you about a seminar we are having here in the Villages in January
Where: The Villages, La Hacienda Center
When: Sat. Jan 8, 2011
Registration: 10:00 am-10:30 am
Lunch: 10:30 am-11:00 am (No lunches dispensed once program begins)
Program: 11:15 am
Speaker: Dr Stanley Krolczk
Director, MS Center at USF in Tampa
Program: Pro's and Con's of CCSVI Liberation Treatment, New and Immerging Therapies for the Treatment of MS

Lunch will be from Jersey Mike's
Choices:
1. Roast Beef and Provolone Sub
2. Turkey Breast and Provolone Sub
3. Original Italian Sub
4. Veggie Sub
Drinks provided: Iced Tea, Lemonade, and Water

Congratulations to Steve Berkovitz and BarbGaines! The Mid-Florida Chapter held its Annual Meeting and Symposium Saturday November 6^th in Orlando. Two of our members were cited for their dedication to making a difference. Steve was honored with the Volunteer of the Year Award and Barb with the Advocate of the Year Award. Congratulations to both of you and thank you for all that you do!

Asking for our help: The Marion Therapeutic Riding Association has been an amazing help to those of us who have had the privilege of participating in their program. We have been able to do this for 2 years based on a grant through MSF which will continue into the new year. Since we are on a grant we are not a cost problem for MTRA however, they, like other non-profits, depend on private and corporate donations which have dropped this year. MTRA has 2 sites; the one we use and the other attached to Hillsborough School which is for special needs children. This is a great benefit to these youngsters. MTRA will have a booth at Spanish Springs on Wednesday November 17^th. If you can, please visit their booth, learn about their services and donate to this very worthy cause

Upcoming seminar: Sorono is sponsoring a seminar Tuesday November 30th at Buca di Beppo, 8001 Orange Blossom Trail, Orlando. 5:30 Registration; 6:00 Program. Complimentary dinner provided. RSVP 1-877-329-8327 Patricia Pagnotta, ARNP will speak on understanding and treating relapsing-remitting MS.

Upcoming seminar for newly diagnosed: I suggest that newly diagnosed would be those diagnosed in the last 2 years. I have attached the flier. If you can’t read it, let me know and I will send it differently or look on our website

The first fundraiser we are planning is a concert on February 3^rd at the Church on the Square featuring Mary Jo Vitale and Dave Worker. They did a concert for us last year which was amazing. Unlike last year Steve B. will not have a large group of tickets to sell. However, if you need accessible seating, contact Steve. He does have those tickets. For everyone else, the tickets go on sale at the box office Wednesday, December 15^th. They are $10 and $12. Tickets will be $15 at the door.

Dec 7—MSVP Holiday Luncheon at 11:45 at Lopez Legacy Restaurant, We are limited to 40 people. Kathy will accept reservations on a first come, first served basis and will keep will keep a waiting list if we overbook.

Menu choices:
Cranberry Walnut Chicken Salad
Legacy Club sandwich—grilled chicken breast
English Bacon Swiss Burger
Deli Sandwich—Ham and Turkey
Bring a new unwrapped toy or a donation for Toys for Tots.
Call Kathy @751-0207 or kathysunset@embarqmail.com by November 30^th and give Kathy your menu choice. As with seminars and other special functions, if you have a reservation, but cannot attend, please call Kathy. Perhaps, someone else would like to use your seat(s).

Dec 14—Bowling at 9:15 at Spanish Springs Lanes. We usually go to lunch after bowling. No reservations are needed.

Dec 15—Tickets go on sale for the Mary Jo Vitale and Dave Worker Concert which is scheduled for February 3rd. It was a sell out last year and we are hoping for the same response this year. The concert is sponsored by Lake Advisory Group and benefits the National Multiple Sclerosis Society. Tickets will be $10 and $12 in advance or $15 at the door.

Jan 8—Seminar with guest speaker Dr. Krolczyk from USF who will speak on CCSVI and medications in the pipeline. This is sponsored by TEVA Neuroscience. Location and details to follow.

Jan 11—9:15 Bowling at Spanish Springs Lanes. We go to lunch after bowling. Reservations are not needed.

Jan 15—The Dr. Krolczyk seminar scheduled for this date, has been changed to January 8^th because the doctor has a conflict for this date.

Jan 18—10:00 Meeting at La Hacienda Center. Steve Berkovitz will talk about public transportation within the Villages. Lake and Sumter have services with reciprocity; Marion has no service. Barb Gaines invited Marlene O’Toole, Rep to the State House, to join us. In the past Marlene has said that she would like to meet our group and we will talk with her about this need. We are on her schedule and she plans to be here unless she is called to Tallahassee unexpectedly.

The Walk committee is meeting twice a month from now until the Walk in March 26^th 2011. It seems lake a long way off, but we have many activities planned and we hope this year to have support from groups in Lake and Marion Counties. Please save the following dates:

Feb 3—7:00 pm Concert at Church on the Square featuring Mary Jo Vitale and Dave Worker. Tickets go on sale December 15th. Ronn Heath is planner.

Feb 26--Mah Jongg Tournament at Bridgeport Recreation Center. Barb Gaines is planner.

Mar 1,8,15 and 22. Vendor night at Lake Sumter featuring our very popular Wheel of Hope.

Other activities will be added. Please think about volunteering to take charge of a fundraiser. They are not labor intensive, but the greater the variety of fundraisers we offer, the more people from the community will become involved.

This is Bill Conway from NMSS: I wanted to let everyone know, that for the first time ever, each general session at this year’s national conference will be streamed live on our national website (Nov. 10-12). This means anyone who is unable to attend the meetings in Chicago can still join us for the general sessions. The sessions can be viewed live while they are happening, or accessed later via a recorded version.

I also wanted to let everyone know, that for the first time ever, each general session at this year’s national conference will be streamed live on our national website (Nov. 10-12). This means anyone who is unable to attend the meetings in Chicago can still join us for the general sessions. The sessions can be viewed live while they are happening, or accessed later via a recorded version. All sessions can be viewed live by visiting: www.NationalMSSociety.org/nationalconference

There are several seminars each year in the mid-Florida area. They are usually held in restaurants with limited seating and they often fill quickly. In order to not miss out on the ones which you would like to attend, I suggest you go to our web site www.mssuportgroup.org to the drug-company links and call or sign up with Teva, Biogen, Sorono and Betaseron and you will receive fliers about their seminars in the mail. Then take a moment to sign up with NMSS, MS Focus and MSAA. They are all free and send magazines regularly with timely information

Nov 2—11:15 Luncheon at Lil Bits in the Palm Ridge Plaza Shopping Center across CR 101 North from Southern Trace Shopping Plaza.

Nov 6—Annual Meeting and Symposium at Dr. Phillips Hospital in Orlando. To sign up, log on to our web site www.mssupportgroup.org, click on “Mid-Florida Chapter of the Society” and on the right column click on “Annual Symposium”

Nov 16—10:00 Meeting at La Hacienda Recreation Center. Hannah Williams from Recovery Home Care will speak about their services and Steve B. will talk about local transportation within the Villages. Joe and I will focus on advocating for yourself and/or your loved one in the hospital. We are drawing from recent personal experiences. This will incorporate a great amount of practical information.

In researching solutions to Rose’s MS I came across this doctor who feels that Vertigo can somehow be connected to poor blood drainage in your head and spinal column. Here is an excerpt from his website listed below. It is pretty interesting reading. I thought I would mention that you all have the same thing in common (Vertigo).

Decreased blood flow through the vertebral arteries can cause wide variety of symptoms such as fatigue, dizziness, loss of balance and coordination to name a few. The complete list of symptoms is too long to discuss here so I will save it for future posts

Late last night our MS registry bill (now call the National Neurological Diseases Surveillance System Act) passed the House of Representatives by an unrecorded voice vote. This success is due in large part to two years of advocacy efforts by our grassroots and key volunteers.

We now will focus on the Senate where we will be susceptible to issues beyond our control like the up-coming elections. We have already begun the targeted advocacy for this stage in several areas and expect many opportunities for broad advocacy efforts.

Congratulations to David Chatel, Shawn O'Neail, Shawna Golden, and Lauren Chiarello for their outstanding leadership and activism that led to the passage of this bill in the House of Representatives.

Joyce Nelson,
President and CEO
National Multiple Sclerosis Society
900 S Broadway, Second Floor
Denver, CO 80209

First oral medication approved by FDA!!!

FDA Approves Fingolimod - Brand Name Gilenya - First Oral Disease-Modifying Therapy for Relapsing MS - Expected to be available by prescription in coming weeks

The U.S. Food and Drug Administration has approved fingolimod capsules (Gilenya,™ Novartis International AG) for reducing the frequency of clinical relapses and delaying the accumulation of physical disability in relapsing forms of MS, making it the first oral disease-modifying therapy for the treatment of multiple sclerosis. According to Novartis, the drug will be available for prescription in coming weeks.

Gilenya (pronounced Jil-EN-ee-ah) will be available as a first-line treatment, which means that there are no recommendations in the approved labeling for people to try other MS therapies before taking Gilenya.

In June 2010, the National MS Society was among individuals and patient advocacy groups that provided public testimony at an FDA advisory committee meeting about the unmet need for more therapies for people with MS.

Reminder from:		barbaracastlow's Calendar

Title:		Brain Injury Support Group

Date:		Monday September 27, 2010
Time:		6:30 pm - 8:00 pm
Repeats:		This event repeats every month on the last Monday.
Location:		New Life Presbyterian Church, 201 LaVista St, Fruitland Park FL 34731
Street:		201 LaVista Street
City State Zip:		Fruitland Park, FL 34731
Notes:		call Barb at 352-483-1353 for more info

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

This is a new CPR technique which is much simpler. This is a very important video regarding the latest CPR procedure. Please watch and forward to your friends and family if you haven't already done so. You never know, a life may be saved utilizing this new procedure.

Research & Clinical Programs Department
National Multiple Sclerosis Society
733 Third Avenue
New York, NY 10017 USA

Phase III Results of AVP-923 (formerly called Zenvia) Published, Showing It Can Reduce Episodes of Uncontrollable Laughing or Crying in MS and Other Disorders

The results of a Phase III trial of an oral drug designed to treat uncontrollable laughing and/or crying (known as pseudobulbar affect), a troubling symptom experienced by some people with MS, ALS, and other neurological disorders, have now been published. AVP-923 (Avanir Pharmaceuticals) significantly reduced the rate of laughing and crying episodes and appeared to be safe and well tolerated. (Annals of Neurology, published online September 13, 2010)

According to an Avanir press release dated August 5, the U.S. Food and Drug Administration set a date to complete its review of this drug by October 30, 2010. The company also has submitted trade names to the FDA for consideration after receiving notice that the agency did not accept the name "Zenvia" for marketing use.

Background: A small percentage (around 10%) of persons with MS experience episodes of uncontrollable laughing and/or crying that are unpredictable and seem to have little or no relationship to actual events or the individual's actual feelings. This condition is thought to result from lesions - damaged areas - in emotional pathways in the brain. It is important for family members and caregivers to know this, and realize that people who experience these episodes may not always be able to control their expression of emotions. Some medications have shown benefit in small clinical trials, but there is no medication approved specifically to treat this symptom.