At 2:30 Tom opened the meeting and called for everyone to line up for food and refreshments.
After everyone was back to their seats, he announced the April Birthdays, then went on with the upcoming events and meetings.
The May meeting is our Pot Luck Picnic at Edwards Park, from 11 am to 5 pm (or earlier if everyone leaves).
In June, we will meet on the 4th Sunday because of Father’s Day. At that time, we will have a speaker from Community Consultation Specialty Pharmacy. They are coming into Oklahoma.
In July, we will meet at Johnnies. In August, we will meet back here, at the church, and Tom or Jody will line up a speaker.
In September, we will have our Ice Cream Social, and wants to consider also having a “painting party” to go along with it. The attending members thought that was a good idea.
We will have our regular meeting in October (October 15), probably with Jason Klassen from the NMSS. Stephanie is setting up arrangements for the River Boat Trip, tentatively scheduled for October 22nd. In order to get the discount and reserve a boat just for our members, she needs at least 35 people to sign up at $25 each. Checks can be made out to her.
Our December meeting is our Holiday Party, December 3rd. BBQ and Turkey dinner by Smokin’ Chips. Tom has suggested, in a past meeting, that we explore having our party at the Will Rogers Garden. They have a beautiful display of holiday plants and decorations. He will check on the availability.
Tom talked about another paper that had been passed out on the tables, a list of Estate/Yard Sales & Auction List. Sandy had mentioned this to the group last month. It was provided just for anyone who might be interested in attending these. Sometimes you can get good deals on mobility equipment, etc.
Tom asked Jody to update us on the MS Walk scheduled for April 22. The registration begins at 9 am, the walk begins at 10 am. She stated that Free parking was available on the south side of Reno; there will be a shuttle. There will also be a MS Connections Booth, and ATOMS is also scheduled to have a booth, this time.
Tom then talked about the new drug that is being released. Ocrevus (ocrelizumab). It has been approved by the US FDA to treat MS. The NMSS states it is a “game changer”. It is another treatment option for those with Relapsing MS, but “for the first time” it is an approved therapy for those with Primary Progressive MS. “This MAB tx was shown to ‘be better’ than interferon tx across several outcome measures.
On the back of the agenda, Tom broke out the clinical name, “Ocre-li-zu-mab”. He stated that “li” means it focuses on the “Immune fx” (function), the “zu” means it is a “Human Protein”, and “mab” is a “monocional antibody”. “It is a “new mechanism to decrease B cells (a good thing), that would have stimulated T cells (a bad thing).” He stated that the thought is that T cells destroys the myelin.
He stated that you can have an active relapse without any new lesions, and you can have activity with old lesions.
One person stated that after their last MRI with Tsabri, they had no more (new) lesions, or they had dead lesions.
Our speaker today is Sally Westmoreland, Fitness Instructor at Lighthouse Sports Center, which is located on the NE corner of Hefner Parkway and Hefner Ave, near Lake Hefner. Sally stated that she has RA (Rheumatoid Arthritis). She took medical retirement from the classroom, and found the “best kept secret” – exercise in water. She teaches Arthritis and MS classes.
She said that water removes the pain of gravity, and the big benefit is that it lasts for hours. If you can, you need to “keep moving” with RA, that it lessens the pain, and water helps you do that. It also helps with “strength training”, because “you would be surprised” how much resistance there is to move in the water. The best water level for these exercises is at the arm pit.
She stated that Emily is her “success story”. She came in barely able to walk, and now she still has a little difficulty, but is doing much better. She also stated that Emily wouldn’t leave the side of the pool (typical) when she first started, but now she is able to fully participate in the exercises, and that has only been a few months.
The program: You meet once a week with Diana Levin. Wanda Hutton is the Head Manager. You can join for $40/Month, or buy a punch card for $30 for 6 visits. A one-time trial is $10.
On Wednesday at 11 am, is the warm water exercises. She showed some styrofoam barbells she said they use for the water exercises. She recommends ankle weights to help with strengthening and to help with stability in the water.
The Therapy pool has to be 90 degrees She does recommend wearing water shoes to prevent slipping. She starts with walking, then works the arms, the legs, and then the body motion. She also has Water Safety Certification for anyone that may have trouble, or issues in the pool.
If someone has a chronic illness, most stay home, and quit working. That is one of the worst things you can do. Your muscles become weak, and you lose the strength and stamina. These classes help build that strength and stamina, not by lifting weights, although you can add that to your routine, but by increasing repetitions, increases strength and stamina. There was a lot of discussion about abilities of different persons attending class and strength to get out vs strength to go in.
1-time trial $10
6-time punch card $30;
$40 to join, use of the facility.
She recommends water shoes and ankle weights.
Jacob, of the Office of Disability Concerns stated that Neuro Resources has closed its doors after 15 years. That means there will be no more ability Expos. Jacob with others are trying to distribute 100,000 pieces of equipment.
He also stated that the Law Enforcement Cleet Class is now beyond the basic classes. OU will be issuing grants to this.
Tom stated that there are plenty of items on the MS Connections Table.