Parkinson’s

Tailor exercise to fit your life

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Last month a friend died tragically while riding his bike. He had had heart issues in the past and was making a concerted effort to keep his weight down and to exercise. A few days later I read an article in a health newsletter that said: “Excessive exercise, especially if you’re still focusing on traditional endurance cardio like long-distance running, can be particularly troublesome if you have a heart condition.” We wondered if twenty-mile bike rides had stressed Ralph’s heart so much that it gave out. On the other hand, his conscientious program of diet and exercise probably added years to his life.

My husband, Jake, and I are also talking about revamping our exercise programs to fit our changing lives. My husband has hip issues, but the doctor says he can avoid a hip replacement by beingParty careful. Two weeks ago he pulled a muscle in his calf playing squash so he has been taking it easy. We talked about ways he can get exercise while taking it easy on his leg and hip – no simple matter. As for me, this summer I am backing down to playing tennis only once a week instead of three times because I am caring for my aged mother. The less I play, the worse I get. It is frustrating to know that soon I won’t be able to keep up with former tennis partners.

We just returned from Colorado. Four years ago there, we hiked for hours high into the mountains and biked all day. This time no biking or hiking. We were, however, able to take a beautiful walk through a meadow.

Then I think about Lori, so tenacious, so spirited as she tailors her exercise to fit her life with Parkinson’s. I will try to stay as positive as she does and pay attention to lesson number ten: Set realistic, achievable but challenging goals. Goals will move you forward because they create tension between where you are and where you want to go. But, you may have to redefine success. Before you got blindsided by your challenge, you measured success in certain ways. Now your situation may make you measure success differently. Before I had P.D., I was an aerobics instructor. Now I am proud to be able to go ballroom dancing.

 

 

 

 

 

Research Shows Being Bilingual Forestalls Alzheimer’s

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This week I had a wonderful almost-surprise visit from a friend named Sandy Disner who is a professor of linguistics at USC. On the way to the airport we started talking about language acquisition in children. Just as we reached the drop-off point, Sandy told me that research shows being bilingual forestalls Alzheimer’s four years. With my family history – a father who had Alzheimer’s and a mother with dementia, I got really interested and texted her later to find out the name of the researcher.

Canadian neuroscientist Ellen Bialystock used MRIs to study older, bilingual adults in various stages of Alzheimer’s. In an article in the Manchester Guardian Alzheimer'sBialystock reports, “We did a study at the Baycrest geriatric centre in Toronto in which we identified 200 clear cases of Alzheimer’s disease and looked at the patients’ backgrounds to see if they were mono- or bilingual. Then we looked at how old they were when the family noticed something was wrong and when they were formally diagnosed. In both cases the bilinguals were significantly older, by about four years.” She goes on to say, “We did a second study with 20 monolinguals and 20 bilinguals, all about 75 years old. They had all been diagnosed with Alzheimer’s, and they were at exactly the same cognitive level, so you would expect them to have the same level of damage in the medial-temporal cortex. But when we looked at their brains, we found that the bilinguals had significantly more damage than the monolinguals. They had more advanced Alzheimer’s but they were functioning at the same level. That’s the advantage: they could cope with the disease better.”

Not all of us have the opportunity to be bilingual, but Bialystock goes on to say that this research suggests that learning a language late in life is probably beneficial “not because of bilingualism but because learning a language is a stimulating mental activity and a good way to exercise your brain.”

It is exciting to learn that there are things you can do to slow the process of dementia taking over your brain. Lori Patin knows this intuitively and is fighting back. Parkinson’s can cause dementia as the disease progresses, but she is doing everything she can to prevent that from happening. While she exercises her body four hours a day, she also does regular brain workouts. She plays bridge twice a week because this card game requires you to remember all the cards that are played. Just as she strengthens her muscle by lifting weights, she improves her mental capacity by playing bridge and other games that require memorization.

Buying Time for a Cure

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Bob Patin jubilantly emailed a recent article from the Chicago Tribune reporting progress in human stem cell research – a significant discovery proving that adult skin cells can be cloned to produce embryonic stem cells. But more about that later.

Scientific work like this gives Lori hope that a cure for her Parkinson’s disease is within reach. Parkinson’s is a progressive, degenerative disorder that affects the central nervous system. Until now, there has been no cure, only medications that mitigate symptoms. Lori, in her determined, tenacious way, does not sit back and bemoan the lack; rather she believes her cure is just beyond the horizon. Waiting for that cure to arrive, she works hard at keeping her symptoms at bay by exercising four hours a day, taking harp lessons and having a massage, acupuncture and Feldenkrais® treatment every week, among many other things. Her spirits are good because she knows she is buying time until that cure is found.

Allow me to explain the importance of recent research. First, some basics about Parkinson’s. On a biochemical level, a dearth of dopamine in the brain causes this disease.  Dopamine is a neurotransmitter that sends signals to the rest of the body to control movement, among other things. By the time symptoms manifest, dopamine-generating cells have been 80 percent destroyed.

Stem cell research is critical to finding a cure because scientists believe dopamine-generating cells can be developed from embryonic stem cells. The Michael J. Fox Foundation, for example, supports work in stem cell research for Parkinson’s, disease. MJF funded the original proof demonstrating that ES cells could provide a robust source of dopamine neurons.

The catch is that only embryonic stem cells, not adult stem cells, can do this,Embryonic Stem Cellsand they are not readily available due to ethical considerations about harvesting cells from human embryos. The article Bob sent, “Scientists clone human embryonic stem cells from two adults,” offers the promise of using adult skin cells to clone human embryos specifically for the purpose of creating these critical cells.

There is always hope. Buying time is what matters.

 

 

 

 

A Message from a Dream

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The Book Stall

Two weeks ago I had that dream, the dream that’s most people’s worst nightmare: speaking in front of an audience. (At least I wasn’t naked.) In fact, I woke up feeling great. I had been worrying about what to say and my dream told me. I awoke knowing just how to write my speech. It seemed like a miracle to have my dream do my work for me.

Lori, Bob and I were scheduled to speak about Lori’s Lessons at the Book Stall in Winnetka May 4. I so wanted to do a good job for the Patins that nothing I wrote seemed good enough. The dream dispatch was a gift from my subconscious. It didn’t come as word-for-word text, but as a message to be straightforward, to tell why Lori’s story is so great and to say what a privilege it has been to tell it. This may sound obvious now, but it wasn’t before my subconscious gave me the dream.

I am a great believer in the power of the subconscious. When I was in college, I procrastinated about writing papers. The night before they were due, I would read through all my notes and then get a good night sleep. When I woke up, I would sit down at the typewriter and type my paper like magic. While I slept, my subconscious organized all the material, figured out what was most important and tied it all together.

My main problem with speaking about Lori’s Lessons was getting started. I usually open by telling of the blessings the Patins have brought to my life. Between the time that we set up our first meeting and the time we met, my daughter was diagnosed with epilepsy. Lori’s story, her wheel of attack against her disease, has helped me teach my daughter how to stand up to her neurological disorder. Bob’s words of wisdom about caregiving have inspired and strengthened me as I care for her. My daughter gave me permission to tell her part of the story in the book, but I knew she would not want me to discuss it when she was in the audience. That caveat had blocked me from writing the talk I wanted to give. My dream straightened me out: I didn’t need to tell my story.

I love a book by Rollo May entitled The Courage to Create. In it, he said: “The value of dreams…is not that they give a specific answer, but that they open up new areas of psychic reality, shake us out of our customary ruts, and throw light on new segments of our lives.” You just have to be ready to receive the message.

Do Not Go Gently

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Chuck Berry

Last night I took my husband Jake to Blueberry Hill for his birthday. We were able to see Chuck Berry perform in the Duck Room after trying to get tickets for five or six years. Since Chuck performs only once a month, you have to gp online immediately as soon as sales start to buy tickets. It was worth the wait: Chuck is 87 and still rockin’ and rollin’. I loved his music when I was a teenager and he was wild and free. I loved him yesterday too. This is certainly a tamer Chuck than the guitar legend. We sat front-row-center and could see how management puts a list of songs with keys in huge letters on the floor. He got the key wrong once anyway to the annoyance of Charles Berry, Jr. who performs along with his Dad and sister Ingrid. Right key, wrong key, April 23rd was Chuck’s 203rd consecutive performance at Blueberry Hill. How cool is that?

A lot of people his age would be resting on their laurels with their feet up in front of the television. Instead he is singing and playing the guitar for over an hour, sweating under the hot stage lights. Even putting one foot out and sliding on the other in a modification of the dance he pioneered – the “Duck Walk.”

That’s why I admire Lori so much. Like Chuck who won’t let the diagnosis of advanced age put him out to pasture, she is living her life to the fullest despite the diagnosis of Parkinson’s.  When she first heard she had the disease, she says, “I felt like I just wanted to sit in a corner and cry until I died.” Then something powerful happened. She realized Parkinson’s would never kill her, so she determined to make the absolute best of her life. And she has. “I can choose to not let this get to me. And, if it does, then I can figure out another way to fight. And another way after that. I can beat this.”