If you want to know how to adapt when your life has been completely upended, ask Rich F. Not only has he adjusted, he has such a positive outlook that he could probably give a TED talk on how to stay upbeat when just walking from one room to another takes a herculean effort.
Rich, 59, has primary progressive multiple sclerosis, a type of disease that continually gets worse. Until recently, there was no treatment. But now, under the care of Dr. Mary Ann Picone, Director of the Alfiero and Lucia Palestroni Multiple Sclerosis Center at Holy Name, he is on medication that may be slowing his decline.
“I can’t really tell how my medication is working because I don’t know what my trajectory would be without it, but my wife believes my decline was much worse – more severe and faster – before I started,” Rich said. “And I do believe my progression has slowed significantly.”
Rich was 47 years old when he was walking across a bridge over the Delaware River and he noticed he was walking kind of sideways. It happened again while he was cutting his lawn. He went to a neurologist near his home in Morris County, the beginning of a two-year journey to a correct diagnosis.
During that time, Rich was incorrectly treated for the more common type of MS, called relapsing remitting, and also for a rare disease called neuromyelitis optica (NMO). Then he found Dr. Picone.
“When I got the primary progressive diagnosis about 10 years ago, it was a gut punch because there was no treatment for it at that time,” Rich said. “But Dr. Picone was great – even back then. I remember her talking to me for a very short time before she asked how I was bathing. No one had done that. She immediately gave me a prescription for a shower chair.”
“And for the past 10 years, she continues to be very knowledgeable and yet makes you feel like you’re family,” he said. “Her staff is the same way – so disciplined and efficient and so compassionate, all at the same time.”
Rich’s decline was swift – a couple of years after being diagnosed, he had to stop working. Six years in, he could no longer walk on his own and continues to use a combination of hiking poles, manual wheelchair and electric trike.
“This disease beats you up – you have to work hard and push back,” Rich said. “Your muscles deteriorate so it’s your bones holding you up – it’s like walking on stilts all the time. But I plan my day and make sure I have the energy to do all that I want to do.”
It isn’t a short list. A nature lover, Rich makes sure to spend time everyday communing with the outdoors. “I can’t go out far in nature so I bring nature to me.”
He has created a sanctuary in his yard; especially enjoying winter scenes when the raptors make an appearance. He works with his son on special projects, and devotes time to nature and photography.
“How do I deal with this? There are still so many beautiful things in this world and I have wonderful support from my wife and son,” Rich said. “I find peace and solace in nature and I try to stay as active as possible. My decline continues and I will probably never walk again unless there’s a miracle drug. I have to come to terms with that but I have a rich, beautiful life. I also have so much faith in Dr. Picone and the care I receive from Holy Name. Times have changed and there are wonderful therapies out there. If a new one comes along, she’ll be the first to know about it.”
