About 13 years ago, just before she turned 65, Donna Beveridge began to notice that she had some cognitive issues. She was forgetting things and often felt overwhelmed with details that never used to bother her. She made a list of everything she was observing about herself and presented it to her primary care doctor. She referred her to a memory clinic for comprehensive testing followed by an appointment with a neurologist.
He said you have probable early stage Alzheimer’s and to be prepared to be in a nursing home within seven years. And so, that was kind of it. I am the kind of person who tries to accept what is and that’s what I did. I embraced the diagnosis. If this is what it is then I wanted to live with it the best that I could.Donna Beveridge
At her daughter’s suggestion, Donna took some watercolor painting classes. She loved it so much she began chronicling her Alzheimer’s journey through her paintings. She had art shows and also presented her work at hospitals and in various workshops.
She also joined a support group through the Alzheimer’s Association for people with early-stage Alzheimer’s. Most of the other participants had similar symptoms but Donna also noticed that some people progressed, while she didn’t. She knew that people respond differently so she didn’t think anything of it.
About five years into her Alzheimer’s diagnosis, her neurologist left the practice and she had her annual visit with a new one, who asked if she’d ever been tested for sleep apnea. She hadn’t. In fact, no one had even mentioned sleep apnea before.
He sent me for a test and the results were that I had severe sleep apnea. My oxygen levels, which should be above 90 were in the 60s and 70s. Apparently, that was killing off my brain cells.
What is sleep apnea?
When someone has sleep apnea, they stop breathing while they are asleep, momentarily cutting off the supply of oxygen to brain cells. When it happens, the brain kicks in and alerts the respiratory system to start breathing again. Even so, there can be serious consequences if you repeatedly stop breathing even for a few seconds. One of them is memory problems.
The new neurologist recommended that Donna wear a continuous positive air pressure (CPAP) machine when she sleeps to help open her airways and prevent episodes of sleep apnea. It didn’t miraculously take away all of her cognitive issues, but she felt better almost immediately.
I had a tremendous amount of fatigue which goes along with sleep apnea and it was mixing in with the cognitive issues and so it made it very hard to feel like myself and do my normal things. So, the CPAP made quite a difference there and I’ve continued to feel as if that’s doing me good.
About three years after her sleep apnea was discovered, Donna went under the care of yet another neurologist who determined that her diagnosis of Alzheimer’s disease no longer applied. She still has some cognitive issues, but nothing appears to be getting worse or progressing.
I’m not as good at organizing things and can get overwhelmed with details. I also have typical kinds of things that older people often have with word retrieval, remembering names, that kind of thing. I have to keep very good notes and write everything down, but it’s not what I was dealing with before.
Not having Alzheimer’s after all was a great relief but Donna still had some trouble making the transition after believing for so many years that she did.
It’s strange. Watercolor and painting my journey was my passion, and interacting with all the people and my support group. I had a hard time when the diagnosis was taken away. I had my identity and I had accepted who I was and what was going to happen then with me. But it was good. I’m happy to have my life. Absolutely.
She’s hasn’t done any paintings lately, but she still talks to groups. Her emphasis now is that it’s important to rule out all of the possible causes of dementia or memory issues. Looking back, she’s amazed that sleep apnea wasn’t considered any sooner.
She has also developed a new passion — volunteering for a wonderful organization called Age Friendly Saco. She coordinates the Handy Neighbors Program, which provides simple services that allow people to stay in their own homes as they age.
I have quite a number of handy neighbors and coordinate everything between the requests and the people providing services and the follow up, and I love it.
She’s busy and she’s happy. She’s also very aware of the lessons she learned when she thought she had Alzheimer’s.
One of the things I think is important is that when I thought I had Alzheimer’s I accepted what my life was. Life was much better for me to find that place and then to find what life could still be. I think even when you have the direst of diagnoses, if you can find a place of acceptance and then do what you can with your life, it’s helpful. I’d like to think that whatever might face me at some time that’s the way I would face it again.