Golf season is a month gone now. I had a great summer and was out on the course even more than in the previous three years. I didn't need to take days off during the week to recuperate physically, even though it probably would have aided my sanity. I even held an 18 handicap for a couple of weeks, something I hadn't done since 1994, before MS became a part of my everyday life.
I started minocycline two and a half years ago and have been following the Wheldon regime since November, 2004. I stopped treatment briefly in the spring of 2006, but when symptoms started creeping back, I resumed antibiotic treatment. I'm not experiencing the huge swings that I used to, earlier in the treatment. Things have stabilized.
I am still taking antibiotics every day, but it is easier now that I have substituted azithromycin for rifampin. A lot of my spasticity seems to have disappeared, but left in its place a limp which goes from hardly noticeable to blatantly obvious depending on any number of conditions. I do still feel like I am improving in subtle ways and am still experiencing small breakthroughs two and a half years after starting my antibiotic journey. During that time, other symptoms (restless leg syndrome, notably) have come and gone and returned again.
My steps are much lighter. I don't stomp around the house like I used to and seem to have reached a new level of balance and stability. Last week, I was showing off and did two, 360º pirouettes. I'm sure I didn't look like a ballerina, but I felt like one. I handle stairs more easily. Two years ago, I often struggled to walk 100 steps on my treadmill. After a week or so, I could do 300 or maybe 500 steps at 1.8 km/hr. I just stepped on and did 300 steps at 2.5 km/hr without a misstep.
I mostly notice changes in the little things that I do every day, like walking out to my car, going down to the basement or in my gym routine. I notice myself leaning on things less, taking two stairs at a time sometimes, or getting on a fitness machine without having to use my arms to move my legs.
One of my worst MS symptoms has been headaches, which come on at certain times of the year, usually in the spring and fall when it is most humid here. If my body temperature goes above a certain point, under these conditions, a headache results, which ranges from 1 (mild discomfort) to 4 (excruciating, wish you were dead, pain). The discomfort or pain would dissipate on cooling down with one of the methods I have developed over the years. Recovery could take anywhere from ten minutes to several hours depending on the severity of the headache.
Last year (2005) was my worst year. I probably had about a hundred headaches with about half reaching 3 or more on my rating scale. They were at their worst in the spring of 2005 when I was still undergoing major changes due to the Wheldon protocol. I often thought that I would experience activity in the areas that were being fixed at the moment and that things often got worse before they got better.
In 2006, I experienced a welcome reduction in the headache problems that had been escalating annually over the past ten years. In the spring of 2006, I had a couple of headaches that reached the 3 stage, but I have experienced less than half the number of incidences, this year and they have rarely exceeded 2 in severity. They have been fairly easily dismissed. Life is, indeed, sweet.
While the improvements that I have had may seem small to observers, they have been huge for me. Everything I do is easier and I have a much healthier vision of the future. That being said, it has definitely sunk in that I am not going to have anything near a full recovery. However, if I stop progressing, but still have physical deficits as a result of multiple sclerosis, do I still have MS?
I'm still not quite done with my treatment and, into my third year, don't have any clinical proof to back up my story. No MRIs and I don't even know that my improvements would make a significant shift on the EDSS scale. This may be a good thing , in terms of my disability insurance claim, but it makes it hard to convince people that my condition is improving. I still have some obvious difficulties, but I am so much better. I'm not making as much noise any more, just enjoying the improvements that have occurred and trying to live as full a life as I wish to.