Here is some good news for all you sedentary PWP (thanks for the cite Michael. This answers the question "How hard do I have to exercise?" Apparently not too hard, according to the
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The New Prescription for Parkinson’s: Puttering
Posted by Maggie McGuire Kuhl, September 29, 2015
The New Prescription for Parkinson’s: Puttering
The press has declared sitting the new smoking as research pours in on the negative health effects of a sedentary lifestyle. And exercise may not be answer enough — even marathon runners who sit at a desk all day may be hurting their health.
People with Parkinson’s are no exception. A recent paper from The University of Michigan shows that more everyday physical activity, perhaps more so than vigorous exercise, is associated with less severe motor symptoms. The Michael J. Fox Foundation supported the study.
Motor difficulties are a trademark of Parkinson’s disease (PD), but many people assume the deterioration seen in advanced stages is solely from dopamine loss.
“It is also plausible that lack of physical activity worsens motor symptom severity in PD independent of the degree of nigrostriatal [brain] degeneration,” the authors wrote. Their study investigated that relationship.
The study team enrolled 48 people with PD, most with moderate severity of disease. Each had an imaging scan to measure brain dopamine change and completed a survey that asked about time spent doing various physical activities — both exercise and other actions such as housework and visiting local events.
They found that increased motor severity (measured by the Unified Parkinson’s Disease Rating Scale) was associated with decreased duration of non-exercise physical activity even when accounting for brain dopamine change, levodopa medication dose, age and duration of disease. Translation: those people who did more puttering and low-impact activity had less severe motor symptoms. Further analysis showed the biggest impact on slowness, gait and balance, more so than rigidity and tremor.
“The study indicates that disability of Parkinson’s is not just from the brain disease itself but also a consequence of a sedentary lifestyle. Non-exercise physical activity has an independent outcome on patients' motor impairments,” says lead researcher Nicolaas Bohnen, MD, PhD.
Interestingly, they did not find the same association between motor severity and duration of exercise activity. More time spent exercising did not mean less severe motor symptoms in this study. Dr. Bohnen’s paper suggests this may be because exercise uses a different brain region than is used for daily movement. Non-exercise physical activity also may contribute to habit formation, where the brain knows how to build motor routines to better meet the demands of daily life.
While beneficial, building in more activity is easier said than done. Poor peer support, lack of motivation, fear of social stigma and barriers to activity (geographic location, for example) make it difficult to get up and go. That inactivity breeds more of the same, though, as people have decreased muscle strength, deconditioned reflexes and fear of falling, the researchers write.
“A vicious cycle of worsening parkinsonism and increasingly sedentary behavior may explain decreasing physical activity in advanced PD,” they said.
Starting small — tracking your steps with a pedometer and setting incremental goals or working with a physical therapist to gain strength — can help increase activity.
“A person with Parkinson disease will be best off when medical management, such as taking medications, will be combined with behavioral interventions that reduce a sedentary lifestyle. The good news here is that this does not require intense or vigorous exercise efforts but can be done right at home while cooking, doing this dishes, cleaning the house, working in the garden or walking the dog,” says Dr. Bohnen.
He found many participants for this study through the MJFF online tool Fox Trial Finder. Register today to be matched with Parkinson’s studies in your area looking for volunteers like you. People with or without PD can register.
Interesting, but I have minor touch of OCD, just enough that I can't quit pushing my body to its limit.
Parkinson's treatment produces 'remarkable' results for Kingston man
By Michael Lea, Kingston Whig-Standard
Wednesday, February 10, 2016 5:31:07 EST PM
Garth Scott, at his home in Kingston, holds the Duodopa pump that injects medication directly into his small intestine to control the symptoms of his Parkinson's Disease. The procedure is relatively new to Canada. (Michael Lea/The Whig-Standard)
Garth Scott, at his home in Kingston, holds the Duodopa pump that injects medication directly into his small intestine to control the symptoms of his Parkinson's Disease. The procedure is relatively new to Canada. (Michael Lea/The Whig-Standard)
It was just over 20 years ago when Garth Scott first noticed something odd was going on with his right arm.
For some reason, it wasn’t swinging normally and was always hanging behind his back whenever he walked.
“It took a while for me to notice that. Finally I talked with my family doctor,” he said.
The diagnosis was immediate and unnerving. He had Parkinson’s disease, a gradual degeneration of the nerve cells in the brain that control body movement.
Scott, now 83, didn’t know much about the disease at the time.
“All I thought was everybody with Parkinson’s ran around trembling and shaking.”
For a while, his arm was the only thing that reminded him he now had it.
The longtime Kingston resident had worked at DuPont for more than 40 years, spending five of them as communications co-ordinator before he retired in 1993.
By then, the disease was still “at a livable stage”
“I could function,” he said. “If I didn’t tell you, you wouldn’t really know I had Parkinson’s. I just learned to cope with it.”
Scott loved woodworking in the workshop he had set up in his home, building furniture that included the clock that still graces his living room. He also loved reading and writing.
At first, Parkinson’s didn’t affect his life too much.
“You learned to live with it,” he said. “It just slowly progressed. Medication controlled it.”
Eventually, he started to develop the uncontrolled movements that are common with Parkinson’s. His head would bob and his arms would flail around. Or the opposite would happen and it would seem like he was in slow motion.
“It’s like wading through a barrel of cold molasses,” he said.
Scott remembers one trip to a shopping centre when he suddenly couldn’t move. His brain was sending the signals to his legs but they weren’t responding. His wife, Mary, had to give him a gentle kick in the heel to get him started up again.
“It’s hard for people who don’t have Parkinson’s to understand how that could happen,” he said.
By then in the care of a neurologist, he was on oral doses of dopamine to control the symptoms but had to keep increasing the dosage as they got worse. But taking medication for the slow movements could trigger the arm flailing.
“I went from bad to worse,” he said, and he had to give up his beloved woodworking.
“I was afraid to use a saw,” he said.
Scott couldn’t walk their dog, couldn’t hold a book still enough to read it, couldn’t type on his computer. Even eating was a problem.
“It’s hard to bring a spoonful of soup to your mouth when your hand is flailing around.”
Last summer was the lowest point so far.
“It really got bad. I spent most of last sumer sitting in a chair,” he said. “I couldn’t walk, couldn’t go shopping, couldn’t drive, could hardly do anything.”
Depression, a common symptom for people with Parkinson’s, became an issue.
“You are a prisoner in your own body and there is nothing you can do about it except take the medication and hope for the best,” he said.
Then Scott learned of a new procedure designed to improve the quality of life of Parkinson’s patients.
Instead of taking the medication orally, it is injected through a small opening in the skin directly into the small intestine, through a tube attached to a pump the person carries outside their body.
Dr. Stuart Reid, a neurologist at Kingston General Hospital and Hotel Dieu Hospital who specializes in movement disorders such as Parkinson’s, explained the procedure solves a long-standing problem of oral medications causing those wild movement swings in patients, where they go from being almost motionless to rapid flailing. Patients would take multiple pills a day, trying to time them to minimize the pendulum effect.
In this new procedure, a tube goes into that part of the intestines where the medication — a combination of intestinal gel called levodopa and carbidopa — can be taken directly into the bloodstream.
“You are pretty sure the medication is going to the right place and it is pretty much guaranteed to be absorbed well. And it is going to give very smooth, consistent levels in the brain and the bloodstream,” Reid said. “The reason it works really well is that it can be slowly and constantly delivered throughout the day, a very even level of it.”
That minimizes the chance of movement swings and improves the patient’s quality of life.
The procedure has only been available in Canada since last January, although it has been used in Europe for more than 10 years. Reid explained the delay was a result of such procedures needing to go through two major trials before being approved for North America.
“It is fairly new,” he said. “We are just picking up steam now.”
To date, five operations have been done here, more than anywhere else in the province.
The operation is carried out by a gastroenterologist and doesn’t require as much specialized surgical equipment as the brain surgery that can also be used to help Parkinson’s patients in dire straits.
Reid said the new procedure seems to have only two negative aspects to it.
One is having a tube inserted in your intestine and the need to carry the pump around.
“But most people are OK with that,” he said.
The second is the cost.
“It is hideously expensive,” he said.
As a result, the province has laid down strict criteria for Parkinson’s patients to meet before they can be approved to get the procedure. Their condition must be bad enough that normal medications are no longer effective.
Scott had the operation to have the unit installed last October.
“The surgery was nothing,” he recalled. “It was piece of cake. I went in one day and home the next day.”
Scott had to wait a while to ensure the incision through which the line was installed had healed properly before the pump was put in operation.
“Once that was done, they hooked me up and the next day I noticed a difference,” he said. “It was really quite remarkable. I could walk around, I wasn’t shaking, I didn’t have any low period. It’s a remarkable improvement in my quality of life.”
Simply put, it has given him much of his life back, he said.
“I can walk the dog now. I couldn’t before. It was terrible trying to use my computer. Now I can sit and type all day.”
Scott can go shopping again without worrying about freezing up in mid-mall. He goes to a writing workshop each week.
“I play Frisbee in the backyard with the dog just about every day,” he said. That’s something he couldn’t even imagine this time last year.
Reid also noticed a difference in Scott immediately after the pump was turned on.
“For years I have seen him get worse with the Parkinson’s and more and more affected,” he said. He called Scott “a vibrant man who was a real boon to the community” whose quality of life was steadily decreasing.
But soon after the pump was first turned on, “it was the happiest I have seen the man since I have known him,” Reid said.
“It was like seeing a brand-new person emerge. You wouldn’t believe it. It was a real Lazarus effect.”
Reid wished he had a video to show the before and after differences.
“It was miraculous in many ways. It is miraculously rewarding. It is incredibly fulfilling, too.”
Reid expressed his thanks to the hospitals and the gastroenterologists for supporting the new technology. Also playing a key role is nurse Adrianna Breen, who does the followup care with the patients.
Scott still has limitations to his life that come with being 83.
“But the Parkinson’s limitations have, for all intents and purposes, disappeared. I can’t praise this enough,” he said.
Scott keeps the pump, about the size of a large TV remote, tucked inside his sweater.
“I can honestly say I don’t even know it is there. I just forget about it.”
He keeps it running from 6 a.m. until he goes to bed. Then he disconnects it in case he rolls onto it during the night and kinks the line. He takes a single pill to replace it and it lasts him through the night. In the morning, he reconnects the pump and is ready to go again. It runs on two AA batteries that last a week.
Part of the pump is a bag containing the dual medications, which he has to change every day. A month’s worth is delivered at a time.
The cost to him: “Not a nickle.”
Since getting the procedure done, he has had a couple of people with Parkinson’s who are considering the operation come to his home to talk to him before getting it done themselves.
“They were quite anxious and I hope I was able to reassure them,” Scott said. “I don’t tell them one way or the other that they should do it or they shouldn’t do it — that’s up to them and their doctor. All I can do is set an example and say what it has done for me.”
It isn’t a cure, he stressed, since there is no known cure for Parkinson’s.
“But it helps you manage your symptoms.”
michael.lea@sunmedia.ca
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Maverick - James Garner