Ampyra - Bring It on!

Ampyra is a medication given to persons with MS in order to help them walk better. Due to other factors, like my Balance Vest, my walking ability is like the weather, constantly changing. I have started going to a new neurologist, seeking a fresh outlook of my condition. Anpyra was the latest in a growing number of treatment options available to those of us with MS. Since one of the several side effects of Ampyra is seizures, it was strongly recommended for anyone with a history of seizures to avoid it. I had a strong history of seizures when I was diagnosed with encephalitis when I was 14 years old, sometimes having from 3-5 + daily. My previous neurologist did not prescribe this medication for this reason. Discussing this with my new Dr., and since it had been 50+ years since I last had a seizure we decided to give it a try. I began the twice a day oral pill 6 days ago. Many reviewers stated that it had done wonders for their condition, while others didn't notice any difference.

After just 2 days on the drug, I was noticing that my walking (still with a cane) was improving in that my stride, particularly on my right side had significantly increased along with my walking speed. So now, I too, am a believer. I hesitated to mention my perceived improvement to anyone lest it be associated with a placebo effect, but I am beginning to believe that what I'm experiencing might be here to stay for a while. My wife reminds me each day to take the pill, which I usually have already done so.

There is another newer medication, Lemtrada, which was just approved by the FDA last week after being rejected this past summer. It too offers a new level of hope which I had been told by my previous neurologist that 'there's nothing else out the for you and it doesn't appear that this will change in the near future'. Although we had a great deal of respect and admiration for him, we left under good terms and am grateful that he was there when we needed him.

Thanks, but new hope is back in my corner and that gives me something to be thankful for this Thanksgiving.

2nd Sunday

The 2nd Sunday in October has been designated as a day encouraging exercise as well as physical health. I have been on a committee to plan the event since its inception.
In past years, the event has been moved to several different locations, this years' being held at Evans Apple Orchard just outside of Georgetown. A gravel trail around and through the orchard was designated for walking. The event was well attended.
My job at the actual walk began at the very first function was to use the Segway to ride around the trail and provide water or any needed assistance. I always give away a lot of cold water bottles. The weather was beautiful and a great deal of fun was had by all.

Update 1

I am going to attempt to cover some of the major happenings during my journey with MS since my last posts. After I finished my Tysabri treatments, I began taking the new oral drug Gilenya, which I am still using. I really don't know if, nor how effective it really is. The problem being that I have no way of knowing if I would be better off now if I wasn't taking the drug. There's just no way to know. It does, however, most definitely appear that I'm still slipping somewhat downward. My balance, as well as fatigue remain a problem. Mobility-wise, I'm not as well off as I was this time two years ago and am still using a cane as well as my Segway, although not depending on the Segway near as much as I used to. Just a few weeks ago, I started going to physical therapy once a week. There we are working on my leg strength and my balance, along with a few other problems. The balance problem is what motivated me to begin the therapy sessions, which I plan on covering in a later post. In addition, acupuncture proved to be very effective way for me to handle some of my MS symptoms. Again, I plan on detailing those experiences in later posts. Due to the medication regimen I have been on, I have, for now at least, reached the top rung on the ladder. In the words of my recently past neurologist 'right now there is nothing else out there for you'. When I heard that, I felt as if any hope whatsoever that I had of being able to handle my MS symptoms had been dealt a severe blow. But right now more recent developments and information has helped to shed new light on the situation. Hope has returned once more and there seems to be some 'bounce' in my step again. Once again, more about that soon. For now however, I'll leave with this thought - For me at least, without hope, there is nothing.

Where have I been?

EGad! I just realized that it has been a little over two years since I posted anything new. In that time a lot has happened during my journey with MS, several things which might be helpful to others. My goal is to share some of these relevant happenings a little bit at a time. My motivation began with a phone call from a follower inquiring about the Segway and taking note of the fact that the site is still getting several hits (one day earlier this week it was hit 13 times - most from a Segway chat forum). I still am using my Segways although not as much as I used to. Part of that is due to my slowing down somewhat from either advancing age and/or MS, or most likely both. It still travels with me to malls, Kroger, the movies as well as any other place where a long walk is required. And I still use it to run errands in our town. I still have my love of riding it and actually prefer it to using the car whenever appropriate. Although I still haven't figured out how to get my heater and windshield wipers working during inclement weather 😉. Hope this is not too boring and plan to post more updates before the next two years pass. Would love to hear any comments or suggestions from you, my email address is garyprtt@yahoo.com