Pat Snyder is caregiver to her husband, John, and author of Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer's and Parkinson's Disease. Pat's mission is to help her husband and promote awareness of Lewy Body Dementia, which affects up to 40% of people with Parkinson's.
Jenny’s husband was diagnosed with depression in 2009 and given prescriptions to address that problem. In October of 2010 he had an acute illness which precipitated the more correct diagnosis of Lewy body dementia (LBD). LBD is a member of the Lewy body disease family, which also includes Parkinson’s disease. LBD symptoms may appear in many Parkinson’s patients over the course of their disease.
In late spring of this year, Jenny was on an airplane flying from her home in Great Britain to San Francisco. She was reading my book, Treasures in the Darkness: Extending the Early Stage of LBD, Alzheimer’s, and Parkinson’s Disease, which I wrote to help caregivers like her. LBD is the second most common degenerative form of dementia affecting 1.3 million Americans.
She read about my husband, John, and his sleep issues that preceded LBD by many years. Her interest was high because she was spending a lot of money to have a night sitter for her husband, James, who was experiencing mental and physical restlessness during the night. James would go to bed at 10:30, awaken at 11:30, 12:15, 1:30, sleep until 6:00, and then want to stay in bed until 11:00. This went on for two years. Jenny finally hired a night sitter for James. This allowed her to go to sleep in the guest room and provided protection for James.
In the book I told about how John’s neurologist, who is an LBD specialist, had first addressed his sleep issues before dealing with any cognitive medicines. He prescribed over the counter melatonin, at first in the lowest dosage, then titrating up over a period of weeks until John’s sleep became much improved.
Jenny was excited. She purchased a bottle of 120 tablets of 3mg melatonin for $15.21 while in San Francisco and took it home with her. In Great Britain melatonin is only available by doctor prescription. When she returned home, she gave her husband, James, 3mg of it and he slept more deeply with almost no restlessness or agitation the first night. Jenny said, “It was wonderful to hear him sleeping peacefully for many hours at a time.” However, he awoke at 3:30 to 4:00 in the morning.
So two weeks later, Jenny doubled his dose to 6mg.* James awakened about 5:00 in the morning, went to the bathroom, got back in bed and dozed until about 7:00. Jenny was so happy. “It seems like a miracle to me!” she wrote, “I feel so much better for having a good night’s sleep and he is waking only for the toilet and then gets himself back to bed. My next challenge is to tell the doctors what I have done.”
When Jenny took James to his doctor’s appointment in late July, she took a copy of my book with her to show the doctor “just in case she thought I was making it all up!” James’ new doctor was reluctant to prescribe melatonin. She said it was very expensive in England and that she may be asked to justify her decision by the commissioners of health services locally. (In England health services are managed by the government.) Jenny was informed that the suggested dose is 2.5mg and it was only used in child psychiatry in England. However, the doctor did give James a prescription for thirty days, and Jenny must report back to her in three weeks.
A couple of weeks earlier, Jenny had written to tell me, “I have now cancelled our night sitter! We said our fond farewells last Friday, and hopefully we won’t need her again. I think it has cost me about $49,500 in US dollars to have a night sitter since February 2011.”
My jaw dropped when I read her words. What a life changing series of events!
* It is always best to do something like this at the direction of a physician or with his knowledge and direction as it is happening.