Skip to main content

Four days off Ampyra.

I claim this as my official Monday image.


Four days into life without Ampyra and the absence of this wander drug are increasingly obvious, to me at least. The stumbling has returned, the foot drop is at its best (or worst) and my angst toward BIG PHARM is accelerating by the second.

My goal today is to make a few calls: my insurance company, Ampyra financial assistance, and an urgent request to the Man above.

Since living with MS is much like being a science experiment,  I feel the need to report my findings thus far. Initially I was skeptical about the "walking drug". After eight days of diligent attention to the time of my twice daily dose, I actually noticed a significant difference in my walking gait and fine motor skills. At the end of two weeks, I was walking without a cane for extended distances. I could even peck out several measures on the piano! Week two of my two month trial script, I was dancing in the middle of my living room floor and contemplating joining the water aerobics class at the gym.

I was full of hope and totally sold on the Ampyra life style.

Then my script ran out and my application for financial assistance was denied. I evidently make too much money to request aid. This is the big mystery that requires a solution today. I wish someone had told me that I made too much money years ago and I would have re-evaluated my inclination to pay bills in lieu of going on  extravagant vacations or purchasing that new pair of shoes.

Today I will stumble into my exercise class and hope that I make it through.
Post a Comment

Popular posts from this blog

A Sea of Orange Hope

With a forecast for rain and cool temperatures, many felt the 2018 Walk for MS might be a sloppy mess; but when I arrives in Morgantown, West Virginia, I found an optimistic, celebratory atmosphere that no storm could dampen. Clouds dispersed and skies cleared, knowing that the heavens  could not compete with the storm happening on the ground at the  Waterfront.







The true champions had arrived and their name was Warrior.



Tents were erected, tables arranged, team shirt distributed, books stacked, (I got to share I Have MS. What's Your super Power? !!!!)






acknowledgements made, participants in place, and the walk began,






















with Team Tiffany in the lead. My new MS friend, Tiffany Albright, is an inspiration. she single-handedly recruited an amazing team of walkers that outnumbered any other congregation in attendance. Her numbers were amazing in monetary contributions and the enthusiasm of her teammates was more than inspiring. 

Event though I did not personally join the walkers, my day was fu…

Aubagio Followup

WOW!

Last evening I attended an area meeting to learn more about Aubagio, one of the three oral MS medications on the market. General MS physician Mark Hospodar provided the informational portion of the session, complete with a slide presentation full of facts about multiple sclerosis. It was very basic and mostly repetitive for those pro-active MS sponges. Not mind-blowing stuff, but pretty heavy on the importance of medicating upon diagnosis.
Enough to convince me to take a closer look at my own choice to remain MS drug free.

It was an intimate group of approximately a dozen women plus the doctor. Very relaxed, informal, and free of judgement. We were all there for the same reason with the same goal in mind: to discover the "wonder" drug, or at least something closer to a promised remedy. (In addition to the fantastic Italian cuisine at Muriale's Restaurant. Yum!:)

We heard from Aubagio veteran, Renee, who told her journey with her initial diagnosis s well as her life with …

MS and Exercise

I don't know about you, but sometimes (most of the time) the motivation to exercise is just not there. And that is just plain crazy.

I am more than aware of the positive effects of daily exercise. I always feels better, both physically and mentally, after taking time to stretch, bend, and force my body to meet the challenge of movement. My biggest issue is the accountability. Exercising alone means no one can attest to your commitment. Unfortunately group gym, spa, or class situations are not financially nor logically an option for many of us.

And sometimes, like this morning, it is even an effort to fire up the DVD player in order to access one of my many yoga videos. Even though that cute little blond instructor coos encouraging words my way, her interest in me is purely superficial. We know nothing about one another. 

According to healthcare.com the following chart shows the seven best exercises for living with MS. They are easy, doable and require no equipment or additional cost.…