Carolinas Myositis Support Group Charlotte September 2014

Transcription

1 Carolinas Myositis Support Group Charlotte September 2014 Try to remember the kind of September When life was slow and oh so mellow. Try to Remember, Lyrics by Tom Jones and Harvey Schmidt Meeting Highlights Standing, guest speaker Susan Nowak and Alison. Nancy and Randy along with Crystal and her niece Hailey, New member Lucy with Cynthia and her friend Maxine along with Diana also a new member. We had a great meeting! It was attended by 17 people, with Diana Carter joining us as a new member, along with two guests. Delicious lunches were ordered in from Jason s deli. In accordance with Myositis Awareness Day, the room was decorated with remembrance balloons and a large Myositis Awareness banner. The group members took the balloons home to be displayed to the public. Also, Nancy, Randy and Crystal proudly displayed the South Carolina governor s proclamation regarding Myositis Awareness Day. Good work you three and thank you!

2 The group decided that beginning in 2015, we would meet every other month. The meeting time would also change to Noon. This we hope would free up more time for family events. Guest Speaker Susan Nowak, a certified physical therapist with Carolinas Rehabilitation - Matthews, spoke to the group about physical therapy and the benefits that it can provide to us. Some suggestions she gave to us to prevent falls were: use night lights, do away with throw rugs, wear shoes around the house, and keep the temperature down to about 65 degrees to prevent morning dizziness. Susan also demonstrated a way to safely get yourself up off the floor/ground if you have nothing around to help you. She said that for muscle spasms, which is usually caused by a circulatory condition, to try heat therapy for two days then ice compresses for two days. If no relief is obtained, then Susan Nowak, physical therapist contrast therapy should be used. This involves the alternating of heat with ice every ten minutes. She said that heat relaxes Susan Nowak, physical muscles while ice decreases nerve impulses. therapist Susan advised that when looking for new shoes, it is best to go to a store that has a shoe fitter with the CPEd (certified pedorthists) credentials; example, Foot Solutions. She also said that strengthening exercises are safe exercises for inflammatory diseases Susan Nowak, physical provided that an individual s pain level is not rated at seven or higher. For improved grip therapist strength, her advice was simply use it or lose it. You can use inexpensive household objects (tennis ball, sponges, rubber bands, etc.) to practice techniques to keep or improve your strength. She then gave each of us a resistance band and led us in some muscle strengthening exercises. Susan left informative handouts on balance exercises; the importance of a beginner s walking program; instructions for homemade hot/cold packs; safe stretching techniques; and a list of physical therapist in the Charlotte and surrounding areas. She informed us that most insurances will pay for PT s and that NC residents have something called Direct Access which allows anyone to go to a PT for 30 days without a doctor s order.

3 Getting to Know You From Diana Carter, Charlotte, NC: In September 2004, I began experiencing strange symptoms that doctors in several different specialties could not diagnose. After eighteen months, I was referred to a dermatologist who performed a biopsy of my rash, and the results were determined to be dermatomyositis. As time went by, and I did not develop the associated muscle weakness my diagnosis was changed to amyopathic dermatomyositis. However, two years ago, I experienced an outbreak of Epstein Barr Virus (EBV) that was very painful and did not go away within the normal timeframe. Now after two years, and two surgeries to attempt to repair the damage from the virus, the pain has not diminished and the EBV has remained active. The persistence of this virus, of course, is attributed to my suppressed immune system from the meds to keep the dermatomyositis under control..bits and Pieces Well, the party didn t end with the meeting. T.D. took the banner and more balloons to Wendy s in Rock Hill, SC. Flyers explaining Myositis were given out with each meal ordered. Over 200 flyers were distributed on Sunday, Myositis Awareness Day. South Carolina s Governor, Nikki Haley s proclamation was also on display. Wendy s in Rock Hill, SC on Sunday, September 21, 2014, Myositis Awareness Day.

4 This afghan was sent by our group to the TMA conference to be auctioned off. It sold for $125. Charlia said, It was definitely a hit! TMA was very appreciative of our contribution. Alison explains about the afghan: I found out about this group on FB...it's called Springfield Stitches for a Cause. It is based out of central Illinois, but they solicit stitchers on line and ask them to make and send squares, which are then stitched together and a crocheted border is added to complete the afghan. They receive squares from all over the USA and even England! So they make afghans and then donate them to groups like ours who are trying to fundraise for charitable causes. The girl who designed/stitched the Myositis logo for our afghan actually has Polymyositis and was thrilled to learn about TMA and all they offered! The founder of Springfield Stitches for a Cause is Tracie Blaise. Also, she said they are a 100% volunteer organization and can only continue their mission if people know about them and either want to stitch with them or donate yarn, money or gift cards, etc. So anyplace we can get the word out (newsletter, FB, etc) would be appreciated! Upcoming For our meeting in October, we will be in for a treat. Patty Tatem, Yoga/Aquatics/Certified Fitness Trainer and Director at Plantation Estates will be our speaker. This should be great fun! Don t miss it!

5 "By all these lovely tokens September days are here, With summer s best of weather And autumn s best of cheer." - Helen Hunt Jackson, September, By Brenda Austin