Help with Medicare medications
“Moving to Medicare” (Winter 2019–20) provides helpful ways to alleviate some of the financial burdens of expensive MS drugs. Additional things to consider are if the Medicare beneficiary qualifies financially for Medicare “Extra Help,” prescription drug assistance programs through their state, or Medicaid. The good news is that there are funding foundations like those mentioned in the article. Patients should contact their drug manufacturer’s patient assistance program or their neurologist for guidance. What is the point of having these life-changing medications if those who need them cannot afford them?
Helen Zazulak, Massachusetts
My devices have names, too
Yes! Just like Ardra Shephard (“Awesome aliases,” Winter 2019–20), I have named my devices. My scooter is Mustang Sally. My power chair is named after my grandmother, Marie Schroder. My manual chair is named after my great-great grandmother, Martha Stafford. All three have the initials MS. When we go out, I can tell my husband whom we are taking with us, and he knows whom I am referring to. It is helpful to me to put a positive spin on things!
Tracy Moore, Maryland
Ardra Shephard is a hoot
I just read “Awesome aliases” in your Winter 2019–20 Momentum and loved it. I have had MS since 2002, and although I’m still relatively free from devices, I do use a cane. When I’m having a good day, my cane’s name is “Citizen,” and when the day is not so good, its name is “Mutiny.” Ardra, you rock. Keep that positive attitude!
Frank Steck, Pennsylvania
Welcome take on MS
When I saw the cover of the Winter 2019–20 issue of Momentum, my first thought was “Wow, my friend is on the cover!” I’ve never met Ardra Shephard in person, but I’ve come to think of her as a friend through her excellent blog, Tripping on Air. She gives a welcome, funny take on experiences we have shared and inspires me to keep as active as I can.
Anne Lucas, Ohio
Images produce sense of déjà vu
Thank you so much for publishing the essay and artwork of Randy Huling (“Fragments from my brain,” Winter 2019–20). Mr. Huling possesses an enormous gift in his capacity to communicate the inner life of persons with MS. I was particularly struck by his themes of the fragmenting octopus or nautilus; their odd familiarity produces a powerful sense of déjà vu. His images seem to be directly channeled from the core of one of us who lives with this disease. Yes, his work can be tough to look at, but MS is every bit as much of a gut punch.
Julie Landau, Washington
One step at a time
I just want to send out a thank you to all the people involved in ATO Walks Hard (“Walking tall,” Winter 2019–20). I really feel as though it’s a great DIY fundraiser. Also, I would like to give a big thanks to all of the scientists and researchers doing all they can to try to figure out MS. It is a gigantic mystery to everyone. Like so many discoveries, it takes one step at a time.
James Harmon, New York
Difficult to accept
I agree with Nicole Bradley-Bernard (“Four things I wish someone had told me after my MS diagnosis,” Fall 2019) and it has been really difficult to mourn as I continue my MS journey. It took me almost two years to accept I was not going back to teaching, which I loved and found community in. Now, I am mourning my difficulties walking and the fear of losing my independence. However, after reading this article, I will not be mourning being weak but aiming to be stronger.
Real facts of life
Thank you for the article by Nicole Bradley-Bernard (“Four things I wish someone had told me after my MS diagnosis,” Fall 2019). We do need to be more prepared by doctors with how this can and does affect us daily. We fight a daily battle with an enemy that is silent in attacks and strikes at any time. Add in the rollercoaster of emotions and the picture becomes much clearer on dealing with MS. Hearing about how unkind MS can be is a hard thing to hear but knowing is much better than being in the dark. You can prepare yourself with a backup of friends and family to be there for support. Sometimes, the only question they need to ask you is, “How can I help you deal with this?”
L. Taylor Paris, Tennessee
Still active and grateful
As someone that does still run, has heat intolerance, and lives in a hot and humid environment, I have learned to adapt and suck it up. Our mental state reflects our thoughts and vice versa. One of the many reasons I do not attend MS support groups is this “woe is me” attitude of so many with MS. I have had it for more than 17 years and am still very active. I could feel sorry for myself, but instead I am grateful for my body and mind. Keep up the good work at Momentum.