By the spring of 2005, I was bothered by tingling, weakness and loss of dexterity in my hands. But it was my failing memory that scared me enough to seek answers. For two years, I had been secretly struggling with cognitive issues — fuzzy thinking, trouble making decisions, multitasking and short-term memory issues. My kids laughed when I tried to order a pizza, and I couldn’t remember our own address. I laughed too, but deep inside I was scared. Something had changed in my brain, and I was becoming forgetful, confused and had even gotten lost driving on what should have been familiar roads. At times, I was unable to answer even simple questions. I got frustrated and angry at others and myself, fearing I was going insane. I tried to mask and hide it all. Having recently been awarded sole custody of my kids, I feared losing my mind would certainly lead to losing my children.
Cognitive issues in multiple sclerosis (MS) patients are common, and most of the time they remain minor and manageable. However, when it is your brain that goes to mush at the most inopportune time, it really sucks! I spent the first seven years after my diagnosis hiding my memory deficits. I struggled with multitasking, retaining information and names. My cognitive issues caused me collateral damage in the form of anxiety and extreme exhaustion, and I was pretty sure they would cause me to lose my ability to support my family.
Today, as I travel the country sharing my story, I explain my cognitive difficulties freely with my audiences, family and friends. I try to make light of my symptoms and have a funny quip always on hand for when I get caught in a brain fog. I don’t fear losing my job or my kids who have grown up and moved out. I have learned ways to work around my poor memory by using a smart phone, planning my days better and exercising. The exhaustion caused by worry has been reduced, and I have come to terms with my limitations, but there are still times when my disease-ridden brain writes checks even my witty humor can’t cash.
Such was the case at a recent motorcycle convention in Orlando, where I was unfortunately reminded of how much damage my immune system has caused by chewing away my brain and leaving gaping potholes.
It was exciting to be invited to display my motorcycle inside the convention center with the big dogs and share my story and quest to ride a million miles on my Yamaha. I would have the opportunity to see and meet racing legends and representatives from all the major motorcycle product manufacturers and retailers. It was another opportunity to find and secure new sponsors, as well as thank the ones already supporting me.
I spoke at a dinner, sponsored by a pharmaceutical company, for people living with MS the night before the convention, and coincidentally would be delivering a talk in the same city on my return a few days later. It was a decent crowd, and the doctor who spoke was energetic and personable, so we chatted a bit afterwards about my adventures.
After a leisurely ride to my hotel the following day, I began my preparation routine for the convention, looked at a street map to make sure I knew how to get to the center and copied the venue’s floor plan into my phone. My bike was ready with brochure holders in place. I had snacks and drinks in my backpack, and I set my clothes and medications out for each of the three days. I knew I would be tired each night and getting these things done now would save me from having to endure a game of indecisive mental ping-pong later.
I arrived at the convention center but somehow entered on the opposite side from where the event was and walked at least 50 miles throughout the building to get to the right place. I then had to retrieve my motorcycle and get it to the proper loading area. I was tired and hot, and the convention had not even started yet!
After settling in, I noted where my booth was in relation to the entrance and went to find a restroom. After leaving the restroom, I couldn’t remember what I had just made a mental note of and proceeded to get lost while trying to find my way back to my bike. It is hard to explain, but looking up and around in a noisy, crowded environment, I could see all the banners, booths and people, which appeared to be familiar and yet unfamiliar to me, all at the same time.
It wasn’t until the third day of the convention that I was finally able to find my way back to my booth without the help of someone else. It wasn’t that I didn’t remember I was located three rows back from the middle of the front entrance, I just couldn’t trust myself as to find the front entrance. I would walk halfway there and stop, think I recognized another path and switch directions. If I had been wearing my SPOT Personal tracker device, I would have created quite a bit of entertainment for my followers! ...To read the full article, login or become a member --- it's free!