Today is Multiple Sclerosis boot camp day! Unlike most boot camps, this one included an occupational therapist, physical therapist, and a drug specialist. While it was not physically exhausting, it was definitely mentally exhausting! I had to leave before we went to the last station, so I am interested in finding out what the drug specialist had to offer. It costs us a total of $148.00 and was worth every penny!
When Josh was diagnosed with MS, I began researching doctors and MS specialists in the state of Alabama. We found the Tanner Center for MS and Josh became a patient of Dr. Emily Riser. She has pretty much devoted her practice, research, and passion to Multiple Sclerosis. I felt more comfortable (and Josh does, too!) using a specialist who is up to date on medicine and research, as well as has a positive outlook on the advances in Multiple Sclerosis. It truly is amazing the advances that have been made with medicine and research in the past 5 years!
The occupational therapist checked Josh for many things, including his balance and muscle performance/weakness. Overall, he did great. She gave him exercises to help increase his eye muscles which in turn will strengthen his coordination. Within a few weeks, the exercises will help his body acclimate to the changes from MS. (The changes have been minor, thank goodness!) He also tried out a stimulating glove that might help with the small amount of numbness and tingling. in his left hand. It did not do much for him, and insurance does not cover the glove SO no need for him to use it.
The physical therapist was great. She talked with us about heat tolerance, fatigues, and the importance of recognizing when something is a true flare-up vs. a heat intolerance. A few side notes... Josh has always been able to walk out of the door and run a couple of miles. Me? I run about a block, almost pass out, and remember why I have always hated running. :) So far, this has not changed since the MS diagnosis. Josh also bikes, so the therapist recommended a cooling vest that he might want to wear in the summer. We live in Alabama so the heat in the summer is pretty brutal.
Another side note... the therapist is from Greenville, MS and has family in Rolling Fork. She went to Washington Academy. I am from Clarksdale and went to Lee Academy. We play each other in sporting events. Small world! It is always exciting to meet someone who is from a Delta town and knows where your Delta town is.
Back track to our time with the occupational therapist. After talking about the insurance not covering the cost of the glove, she added that our insurance wasn't covering her time with us or the physical therapist, but that a grant was paying for our visit. Our doctor actually has a non-profit and writes grants to cover the costs of her patients seeing occupational and physical therapists to determine baselines and exercises to improve their quality of life. (Not really sure of requirements/guidelines, though)
1. I was floored that insurance doesn't cover this. I mean, these exercises help improve muscle conditions, thus limiting the chance of being debilitated. These conditions are a direct result of an auto-immune disease.
2. I was humbled that the costs were being covered, and that it was one less expense we had to worry about on this journey. It was also really cool that I didn't have to set this up, they took care of that for us. We have full time jobs and 3 kids. Believe me, I really appreciated that.
3. I was overwhelmed with sadness that so many people could benefit from these fairly simple services, but without the resources, they are not getting these services. In a country like the United States, it blows me away that so many people go without something they need OR they are not helped to find the resources that can help them get access and afford these things.
We recently did a book study in our Sunday School class about finding your God purpose. This purpose/dream is more than often different than your day job. They call it your burning bush. (A reference to Moses in the Bible.)
As I was writing things down from the boot camp, it hit me. This was going to be my "Burning Bush." I am so interested and really feel compelled to help others with MS who need the help. So far, people/organizations have stepped up to help us. When Josh was prescribed Tecfidera, our insurance denied the medicine. Even though it is covered and listed on our plan. DENIED. After talking to the insurance person, it was clear to me this is protocol. Basically deny the really expensive drugs in hopes that the paperwork and appeal process will be overwhelming and the patient will move to a less expensive drug. I have done pharmaceutical sales. I know how this works... We are in the appeals process, but in the meantime, Josh needs his medicine. Upon being denied, we received a call from MS Active Source. We were approved for patient assistance and now receive the drug free for a year. Free!! A Year!!! This medicine is $54,000.00 a year out of pocket. So yep. Free!! For a YEAR!!!
So... I am really hoping to find someways to get involved in writing grants and educating patients on ways to find resources to help them live the best life possible. There- I wrote it so it makes it official.:)