For years, Richard Dolan knew what it felt like to live with nerve pain. He spent many years suffering with trigeminal neuralgia, a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve. Having had “every treatment known to man”, he decided several years ago to have surgery to try and treat the neuralgia. Doctors performed a microvascular decompression and he woke up with no pain. He couldn’t believe it!
Then he realized he had another problem that had been slowly progressing, though mostly unnoticed, for years…peripheral neuropathy in his feet and legs. His neuropathy became “full blown” about five or six years ago and he describes his symptoms as “the usual, conflicting effects – your legs feel cold, but they aren’t cold; tingling, but not in a pleasant way”. His symptoms are most apparent at night when he tries to sleep.
He has been taking medication to help relieve the unpleasant sensations and has tried some other types of treatments, like massage, but they have not been effective for him. He exercises every day because it makes him feel better to keep moving. He is not incapacitated from the activities he enjoys, but life holds it challenges.
Richard talks about trying to keep a positive attitude and about his life – full of family, and an old house “that always needs maintenance.” With three children and five grandchildren nearby, he stays busy. He belonged to a support group for neuralgia patients after his surgery. He hoped he could find another one to help him deal with his peripheral neuropathy. His lone granddaughter, who he affectionately calls “an irresistible bully”, had been asking him to buy a computer so they could exchange emails – so he bought a computer. But, since she lives only a few blocks away and they see each other often, he used it to look up information about peripheral neuropathy.
He found The Foundation for Peripheral Neuropathy website and learned about our connection to Johns Hopkins. He calls it, “serendipity”. He contacted Pam Shlemon, the Executive Director, who talked extensively with him and put him in touch with our partners at Johns Hopkins. Richard made an appointment and went to see Dr. Ahmet Höke, Director of Neuromuscular Division and a professor at Johns Hopkins School of Medicine.
Saying he was “blown away”, by his experience at Johns Hopkins would be putting it mildly. In a recent email with Ms. Shlemon he writes, “I can now shower you, Johns Hopkins, and Dr. Höke with my undiluted praise and gratitude. I met with Dr. Höke and was unprepared for the scope of the examination and his encyclopedic knowledge of all the latest studies. It was surely the ‘luck of the Irish’ that I stumbled upon you. I am most grateful for your help and guidance. ”
One of the goals of FPN is to provide the resources needed for patients to ‘Live Well with Peripheral Neuropathy’. For Richard, Dr. Höke has started him on a new path – new medications, more knowledge. He says his symptoms are better and he now feels like there is some hope for the future. We are happy to hear that we are making a difference!