Together with his son, Alan runs an avant-garde, highly atmospheric, candle-making bar named Wax + Wine, where customers sip wine while pouring aromatic candles. Alan gets up early and drives himself to work 5 days a week, but he describes that he must deal with fatigue which hits during the day as well as leg weakness, leg stiffness, balance problems, and foot numbness. He combats his loss of energy by taking a prescription drug that gives him temporary relief from the symptom. Alan shares, “This is necessary for me and most important in the morning.” He also naps mid-day. He has not found anything to relieve his symptoms of peripheral neuropathy.
Independence and quality of life are tremendously important to Alan, so he and his wife have made several changes and adopted workarounds.
For one, they sold their historic home with its winding staircase, and they now reside in a city apartment. Alan shares, “We absolutely miss our beautiful home. But being dealt my situation, this apartment is fantastic.”
Alan at Wax + Wine
Another change was the decision to purchase a mobility scooter a little over a year ago. “Actually,” says Alan, “I think of it as an electric trike.” Walking had become more and more difficult, especially in the city. “To live a life without independent mobility was not even a thought when I had this option.” He uses it daily at home and during mini-getaways with his wife of 37 years.
Those mini-getaways and other vacations look different nowadays. Alan noticed that a claim to be handicap accessible doesn’t guarantee a home-away-from home will work for his needs. He must look for a walk-in shower (no tub) and wants his room in any hotel to be as close as possible to the elevator. A learning moment happened just this past summer. Alan and his wife arranged a family event at the beach and rented an Airbnb that had its living space spread across 3 floors. “While it was very nice,” Alan shares, “We will definitely avoid this set up next time.” In contrast, their hotel accommodations worked like a charm during another getaway. “It was a very nice, newer hotel that was very scooter friendly. I drove the trike to dinners, through town, and had no problem getting my wife coffee in the lobby and taking it back to the 12th floor.”
Alan with his wife, Marla, and their grandson, Ledger
Alan confides, “My illness has forever altered my life. There is no medicine, no surgery that will fix what I have. Keeping a light-hearted outlook and not letting this illness consume what is still good is my primary focus.” His thoughtful encouragement for other patients is this: “You have to do what you can for your spouse/mate. They did not sign up for this, so you have to be more flexible and really try to get over any insecurities you may have.”
The APBD Research Foundation has been very important to Alan. He notes, “The Foundation’s outreach has brought far more to me than some medical consults.” Alan tries very hard to be positive. “I hold onto hope and am not in a negative state of mind. I would be willing to participate in studies to help the research and to help myself. I’ll fly anywhere.”
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