We awoke at 4:45 to start our day at Block Island, RI. Tim, our bus driver, greets us with “I know you. Can I give you a hand lovely lady? Ready for a fun day at Block Island?” Jim gives me a quizzical look and says, “I voted for the Mets game, but I got overruled.” I responded with, “We’ve watched the Mets lose millions of time, we don’t need to see that again.”
The driver gives me a hand, while Jim is behind me, in case I needed a boost up that first high step into the bus.
All day Tim helped anyone, who needed help exiting the bus. I appreciated his help, since sometimes my husband, so excited about where we’re going, takes off running. Occasionally I remind him, “Don’t forget me.”
On the way home, Jim said, “That bus driver has a thing for you.” I laughed.“No, he just remembers me from the trip with my mom to the Berkshire Botanical Gardens.
How could he forget us, me with leg braces and cane, trying to help my mother with her “wheelie,” as she calls her walker.
After a fun day on Block Island, including a filling lunch of baked scrod with asparagus, at the Historical Hotel overlooking the ferries coming & going, the bus ride home proved difficult. Painful leg cramps and muscle spasms began shortly after we settled in. Jim moved to the open seat in front of me, giving me space, to stretch and massage my legs.
Fortunately, half way home we made a dinner stop, enabling me to walk around, so I could attempt to work out the kinks. Also, I was thankful the folks ahead of us were a little slow getting off the bus, so I could stomp my legs and feet to wake them up before I disembarked.
For many on the trip with us, although some much older than I, the little bit of walking and climbing the Ferry stairs did not slow them down, like my CMT legs did.
Even so, I will not stop traveling, nor will I avoid places with stairs. I will not stop walking, until I can no longer take another step. So, we need to find a drug to stop CMT leg cramps and muscle spasms. We need to find a drug to stop the progression for the millions of children, who have lost the normal function of their legs and arms. Many more people suffer from CMT than from MS, ALS and many other diseases that everyone knows about. That’s why CMT Awareness Month is so important, to help those, who have been misdiagnosed, or like myself, go undiagnosed for years wondering what’s wrong with them.
For more information about CMT visit: www.cmtausa.org