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Diet, Nutrition, and Parkinson’s: What you Need to Know

July 1, 2020 Life, Research

Diet and nutrition have been found to play a crucial role in Parkinson’s. In a recent ‘Ending Parkinson’s Disease: Live’ webinar on Parkinson’s EU, Parkinson’s expert Dr Bastiaan Bloem, epidemiologist Dr Alberto Ascherio and Parkinson’s campaigner Omotola Thomas, considered how different foods can affect the risk of diagnosis, maintaining bowel health and more.

We share five key takeaways from their discussion.

1. Which foods can affect your risk of developing Parkinson’s?

Diet, said Dr Bloem, “is a really hot topic in the field of Parkinson’s”. Alongside exercise, diet and nutrition “are the big new kids on the block when it comes to improving symptoms, and perhaps, slowing down the progression of the disease.”

Dr Bloem and Dr Ascherio praised the Mediterranean diet, which varies by country and region, for its potential to lower the risk of developing Parkinson’s. The Mediterranean diet is generally high in vegetables, fruits, grains, healthy fats and fish, and is typically low in meat and dairy. Such a diet is rich in nutrients and antioxidants, making it “better than the traditional Western diet”, according to Dr Ascherio.

On the other hand, Dr Bloem theorised that “a lifetime of exposure to dairy” is associated with a higher risk of developing Parkinson’s, likely due to the pesticides ingested by cattle from contaminated grass.

Dr Ascherio added: “I don’t think that globally, dairy products are known to be a major cause of pesticide exposure. Dairy also has other effects like reducing the level of uric acid in blood, which we found to be related to a risk of Parkinson’s disease.”

2. Could you be malnourished if you have Parkinson’s?

While Dr Bloem pointed out that a regular diet should offer all the necessary nutrients, he did note that vitamin D and vitamin C can be exceptions. “Many people, particularly when you age and particularly when you’re a woman, are at risk of developing a vitamin D deficiency. There are fascinating anecdotal reports of people taking vitamin D and experiencing improved motor symptoms.”

Meanwhile, he explained, vitamin C supplements can help to prevent bladder infections in Parkinson’s patients by acidifying the urine. “Bladder infections can trigger a cascade that leads to worsening Parkinson’s symptoms.”

Dr Bloem also debunked the use of supplements like vitamin E, curcumin and Coenzyme Q190, which have been found to offer no benefits to people with Parkinson’s.

3. How can you maintain your bowel health?

Bowel problems are common in Parkinson’s patients, which Dr Bloem said can be alleviated by drinking a lot of water and eating a diet rich in fibres. People with Parkinson’s should see their general practitioner for laxatives only if all else fails. “The rule is you need to have bowel movements at least once every other day.”

Thomas added: “I have a three litre water bottle that I finish by the end of the day. It is a challenge, but I try to finish it. Because I struggle very greatly with constipation, I take three or four ounces of prune juice in the morning and that seems to help me.”

4. How should you take your Parkinson’s medication?

As food can interfere with the efficacy of levodopa medication, Dr Bloem recommended taking levodopa at least half an hour before or after a meal. In particular, he advised that protein intake be spread across the day.

“For most patients, taking your medication with a protein rich meal including dairy products and meat, can reduce gastrointestinal absorption of your levodopa. So, you need the proteins in order to keep up your muscle strength and avoid weight loss but try to spread the proteins over the day.”

Thomas acknowledged that this can be hard to do. She said: “I have a struggle spreading my proteins with my levodopa because I can’t take more than 15mg of levodopa at a time, so I’m taking it every two hours.

“That is one of those things whereby theoretically, I know what I’m supposed to do, but practically, I’m not able to.”

5. Should a dietician be part of your standard Parkinson’s care?

Yes, said Dr Bloem. “I think paying attention to the gut is part of routine clinical care at every consultation for people with Parkinson’s. Parkinson’s starts in the gut for many patients and slow bowel movements are very common, impacting the efficacy of your medication and appetite for food. It needs attention.”

While a Parkinson’s doctor or nurse can offer useful dietary advice, Dr Bloem himself recommends that his patients see a dietician at least once. “I think it’s part of standard care.”

View the webcast.

View WPA’s “Ask the Expert” video on this topic with Michelle McDonagh, RD, Froedtert & Medical College of Wisconsin

“You’re superhuman up there”: Parkinson’s in space

July 1, 2020 Life

Journeying into space is an incredible feat – it’s even more impressive when you’ve been diagnosed with Parkinson’s.

Michael ‘Rich’ Clifford found out he had the condition in 1994. Two years later he undertook his third journey into space on the US Atlantis shuttle.

In webcast conversation with Dr Ray Dorsey, co-author of Ending Parkinson’s Disease: A Prescription for Action, the former astronaut outlined his experience working with US space agency NASA, spoke about his exposure to pesticides – and shared what his symptoms were like in space.

“It was an easy decision to fly”
“When I got diagnosed with Parkinson’s I thought it was over and NASA asked me what I wanted to do,” Clifford told Dorsey. “I said, ‘You mean it’s up to me?’ and they said, ‘Yeah, we consider you still qualified for flight.’ I said, ‘Well, I’ll go fly again.’ And it was as easy as that.”

“It was special, because I’d done a lot of preparatory work on that – all the EVA [Extra-Vehicular Activity] simulations and validation of the positions and equipment we were going to use – so it was an easy decision to fly.”

Asked if he noticed his Parkinson’s symptoms during the seven-day period in space, Clifford said: “I felt my right-hand tremor one time, but it was very mild… I think it showed more in space. I could feel it more. When we re-entered for landing, I noticed with the pull of g-forces, my hands would go down, and it was much easier to work with.”

Lifting heavy equipment, weighing over 150 pounds, was significantly easier: “I could have just dragged it along with my fingernails – it was neat. You’re superhuman up there.”

Parkinson’s and pesticides
Growing up in Utah, US, Clifford had no family history of Parkinson’s. However, he told Dorsey, he was exposed to pesticides through a high-school job cutting grass and while working as a private pilot: “I didn’t know it was dangerous. I didn’t like the way it smelled, but it was just a job.”

Then, working as a gas station attendant Clifford encountered trichloroethylene (TCE) – another substance that has been linked with Parkinson’s.

“In the shop we would get grease spills all the way and would clean it up. I didn’t realise there was a nasty chemical in it, but it was efficient for cleaning up the grease. I did that for about three years.”

“We should be getting rid of these chemicals,” he told Dorsey, who has written about the impact of pesticides in his book. “It’s going to take somebody pushing it, like you are, to get this done.”

“Just because you have Parkinson’s, you don’t have to give up”
When he was first diagnosed, Clifford didn’t tell the rest of his crew that he had the condition. However, he decided to announce it publicly in 2011 – 17 years after his diagnosis – to “get the issue out on the table”.

“I thought it was time to reveal it. I felt it was a good thing for the community for me to announce I had Parkinson’s,” he said.

He was then encouraged by his doctor, whose son was a film producer, to share his story in a movie. ‘The Astronaut’s Secret’, a documentary released in 2014, covers Rich’s experience working with NASA while living with the condition.

Rich hopes his story inspires others with the condition: “Just because you have Parkinson’s, you don’t have to give up.”

Article from Parkinsonslife.EU.

Pingpong May Help Reduce Some Parkinson’s Symptoms

March 1, 2020 Life, Research

The game of pingpong, or table tennis, may hold promise as a form of physical therapy for Parkinson’s disease, according to a preliminary study presented at the American Academy of Neurology’s 72nd Annual Meeting in Toronto, Canada.

The findings show that 12 Parkinson’s patients who participated in a pingpong exercise program once a week for six months experienced improvements in several symptoms, including facial expressions, posture and rigidity. They were also better at getting dressed and getting out of bed.

Parkinson’s disease is a movement disorder in which the brain chemical dopamine gradually declines. This process results in slowly worsening symptoms that include tremor, stiff limbs, slowed movements, impaired posture, walking problems, poor balance and speech changes.

“Pingpong, which is also called table tennis, is a form of aerobic exercise that has been shown in the general population to improve hand-eye coordination, sharpen reflexes, and stimulate the brain,” said study author Ken-ichi Inoue, M.D., of Fukuoka University in Fukuoka, Japan.

“We wanted to examine if people with Parkinson’s disease would see similar benefits that may in turn reduce some of their symptoms.”

The research involved 12 individuals with an average age of 73 with mild to moderate Parkinson’s disease. The participants had been diagnosed with Parkinson’s for an average of seven years. They were tested at the start of the study to see which symptoms they had and how severe the symptoms were.

The patients then played pingpong once a week for six months. During each weekly five-hour session, they performed stretching exercises followed by table tennis exercises with instruction from an experienced table tennis player.

The program was developed specifically for Parkinson’s disease patients by experienced players from the department of Sports Science of Fukuoka University.

Parkinson’s symptoms were evaluated again after three months and at the end of the study.

The results show that at both three months and six months, study participants experienced significant improvements in speech, handwriting, getting dressed, getting out of bed and walking. For example, at the beginning of the study, it took participants an average of more than two attempts to get out of bed. At the end of the study, it took an average of one attempt to get out of bed.

Study participants also experienced significant improvements in facial expression, posture, rigidity, slowness of movement and hand tremors. For example, for neck muscle rigidity, researchers assessed symptoms and scored each participant on a scale of 0 to 4 with a score of 1 representing minimal rigidity, 2 representing mild rigidity, 3 representing moderate rigidity and 4 representing severe rigidity. The average score for all participants at the start of the study was 3 compared to an average score of 2 at the end of the study.

Two participants experienced side effects; one person developed a backache and another person fell down.

“While this study is small, the results are encouraging because they show pingpong, a relatively inexpensive form of therapy, may improve some symptoms of Parkinson’s disease,” said Inoue. “A much larger study is now being planned to confirm these findings.”

The main limitation of the study was that participants were not compared to a control group of people with Parkinson’s disease who did not play pingpong. Another limitation was that a single specialist assessed the patients.

Article from Psychcentral.com.

12 of the best domestic tools for people with Parkinson’s

February 1, 2019 Life

From attachable plate guards to ergonomically designed grabber tools, there are lots of products that make home living that little bit easier. We’ve put together a room-by-room roundup of some of the most useful items for people with Parkinson’s.

Kitchen

1. Plate guard

Plate guards can be subtly fitted onto ordinary plates to help those who can only eat with one hand or have an unsteady grip. The inward facing slopes helps with food collection and prevents spillages.

2. Tailor-made cutlery

Electronic stabilising handles are designed specifically to help people with hand tremors. The utensils are tailor-made to counteract the effect of tremors and have inbuilt sensors and motors to help combat tremors.

3. Kettle pouring stand

Making your morning ‘cuppa’ has never been easier with kettle tippers that helps users pour boiling water without lifting the kettle up – reducing the risk of spills. The frames handily wrap around your kettle, and are held in place with a secure Velcro strap.

Bathroom

4. Foam tubing

Sliding easily over popular household items such as hairbrushes and toothbrushes, foam tubing gives users a firmer grip – making everyday grooming easy and quick.

5. Electric razor

Parkinson’s symptoms like dyskinesia and tremors can make completing everyday tasks like shaving difficult or dangerous. An electric razor is one simple swap that can speed up a morning routine and avoid nips and cuts.

Living Room

6. Grabber tools

Ergonomically designed to mimic how a finger and thumb pick things up, hand grip grabber tools help users reach for things high or low, small or large around the house without stretching or bending.

7. Touch lamps

Touch table lamps help to avoid a struggle with tricky light switches. Simply touch the bases lightly to control the light output and reach the desired brightness, making it that bit easier when settling in for bed.

Bedroom

8. Reading rest

For those who find it hard to keep a book still, consider a reading rest for a more comfortable reading experience. Simply clip the book in and adjust the angle for when in bed or at a desk.

9. Button and zip hook

You can find many easy-to-use, low-cost hooks that help combat fiddly buttons and zips while dressing and undressing.

10. Elastic laces

Get out of the door quicker in the mornings by turning lace-up shoes into slip-ons. Elasticated laces eliminate the need to bend down and tie and untie shoes before leaving the house.

Study

11. RollerMouse

A wireless RollerMouse sits directly in front of the keyboard and the cursor can be moved by touching the rollerbars lightly. Users can switch control between hands when fatigue sets in – improving accuracy and increasing the amount of time spent online in comfort.

12. Keyguards

Keyguards are placed above the keys on a standard keyboard and stop people with hand tremors hitting unwanted keys whilst typing. While it slows down typing speed, it improves accuracy and comfort.

Article from Parkinson’s.eu.

Driving Dilemmas: Risk vs. Independence

July 1, 2018 Caregivers, Life

Driving a car is a symbol of independence and competence and is closely tied to an individual’s identity. It also represents freedom and control and allows older adults to gain easy access to social connections, health care, shopping, activities and even employment. At some point, however, it is predictable that driving skills will deteriorate and individuals will lose the ability to safely operate a vehicle. Even though age alone does not determine when a person needs to stop driving, the decision must be balanced with personal and public safety. Driving beyond one’s ability brings an increased safety risk or even life-threatening situations to all members of society. Statistics show that older drivers are more likely than others to receive traffic citations for failing to yield, making improper left turns, and running red lights or stop signs, which are all indications of a decrease in driving skills. Understandably, dealing with impaired older drivers is a delicate issue.

The road to driving cessation is anything but smooth. Each year, hundreds of thousands of older drivers across the country must face the end of their driving years and become transportation dependent. Unfortunately, finding other means of transportation has not noticeably improved in recent years, leading to a reluctance among older drivers to give up driving privileges and of families to remove the car keys. The primary issue facing older drivers is how to adapt to changes in driving performance while maintaining necessary mobility. Despite being a complicated issue, this process can be more successful when there is a partnership between the physician, older driver, family or caregiver.

Dramatic headlines like these have ignited national media debates and triggered the pressing need for more testing and evaluation of elderly drivers, especially with the swell of the Baby Boomer generation: “Family of four killed by an 80-year-old man driving the wrong way on Highway 169. 86-year-old driver killed 10 people when his vehicle plowed through a farmers’ market in southern California. 93-year-old man crashed his car into a Wal-Mart store, sending six people to the hospital and injuring a 1-year-old child.”

According to the Hartford Insurance Corporation, statistics of older drivers show that after age 75, there is a higher risk of being involved in a collision for every mile driven. The rate of risk is nearly equal to the risk of younger drivers ages 16 to 24. The rate of fatalities increases slightly after age 65 and significantly after age 75. Although older persons with health issues can be satisfactory drivers, they have a higher likelihood of injury or death in an accident.

Undoubtedly, an older adult’s sense of independence vs. driving risk equals a very sensitive and emotionally charged topic. Older adults may agree with the decline of their driving ability, yet feel a sense of loss, blame others, attempt to minimize and justify, and ultimately may feel depressed at the thought of giving up driving privileges. Driving is an earned privilege and in order to continue to drive safely, guidelines and regulations must be in place to evaluate and support older drivers.

Dementia and Driving Cessation

Alzheimer’s disease and driving safety is of particular concern to society. Alzheimer’s disease (AD) is the most common cause of dementia in later life and is a progressive and degenerative brain disease. In the process of driving, different regions of the brain cooperate to receive sensory information through vision and hearing, and a series of decisions are made instantly to successfully navigate. The progression of AD can be unpredictable and affect judgment, reasoning, reaction time and problem-solving. For those diagnosed with Alzheimer’s disease, it is not a matter of if retirement from driving will be necessary, but when. Is it any wonder that driving safety is compromised when changes are occurring in the brain? Where dementia is concerned, driving retirement is an inevitable endpoint for which active communication and planning among drivers, family, and health professionals are essential.

Current statistics from the Alzheimer’s Association indicate that 5.3 million Americans have Alzheimer’s disease (AD) and this number is expected to rise to 11-16 million by the year 2050. Many people in the very early stages of Alzheimer’s can continue to drive; however, they are at an increased risk and driving skills will predictably worsen over time. The Alzheimer’s Association’s position on driving and dementia supports a state licensing procedure that allows for added reporting by key individuals coupled with a fair, knowledgeable, medical review process.

Overall, the assessment of driving fitness in aging individuals, and especially those with dementia, is not clear cut and remains an emerging and evolving field today.

Physician’s Role in Driving Cessation

While most older drivers are safe, this population is more prone to vehicle accidents due to decreased senses, chronic illness and medication-related issues. The three primary functions that are necessary for driving and need to be evaluated are: vision, perception, and motor function. As the number of older drivers rises, patients and their families will increasingly turn to the physicians for guidance on safe driving. This partnership seems to be a key to more effective decision-making and the opinions of doctors vs. family are often valued by older drivers. Physicians are in a forefront position to address physical, sensory and cognitive changes in their aging patients. They can also help patients maintain mobility through proper counseling and referrals to driver evaluation programs. This referral may avoid unnecessary conflict when the doctor, family members or caregivers, and older drivers have differing opinions. (It should be noted that driver evaluation programs are usually not covered by insurance and may require an out-of-pocket cost.)

Not all doctors agree that they are the best source for making final decisions about driving. Physicians may not be able to detect driving problems based on office visits and physical examinations alone. Family members should work with doctors and share observations about driving behavior and health issues to help older adults limit their driving or stop driving altogether. Ultimately, counseling for driving retirement and identifying alternative methods of transportation should be discussed early on in the care process, prior to a crisis. Each state has an Area Agency on Aging program that can be contacted for information, and referrals can be made to a social worker or community agency that provides transportation services.

Resources do exist to help physicians assess older adults with memory impairments, weigh the legal and ethical responsibilities, broach the topic of driving retirement and move toward workable plans. The Hartford Insurance Corporation, for example, offers two free publications that make excellent patient handouts: At the Crossroads: A Guide to Alzheimer’s Disease, Dementia and Driving and We Need to Talk: Family Conversations with Older Drivers.

These resources reveal warning signs and offer practical tips, sound advice, communication starters, and planning forms. Other resources can be found through the Alzheimer’s Association. Physicians can also refer to the laws and reporting requirements for unsafe drivers in their state and work proactively with patients and their families or caregivers to achieve driving retirement before serious problems occur. Ultimately, assessing and counseling patients about their fitness to drive should be part of the medical practice for all patients as they age and face health changes.

Driver’s Role in Driving Cessation

“How will you know when it is time to stop driving?” was a question posed to older adults in a research study. Responses included “When the stress level from my driving gets high enough, I’ll probably throw my keys away” and “When you scare the living daylights out of yourself, that’s when it’s time to stop.” These responses are clues to a lack of insight and regard for the social responsibility of holding a driver’s license and the critical need for education, evaluation and planning.

Realizing one can no longer drive can lead to social isolation and a loss of personal or spousal independence, self-sufficiency, and even employment. In general, older drivers want to decide for themselves when to quit, a decision that often stems from the progression of medical conditions that affect vision, physical abilities, perceptions and, consequently, driving skills. There are many things that an older adult can do to be a safe driver and to participate in his or her own driving cessation.

The Centers for Disease Control and Prevention suggest that older adults:

Exercise regularly to increase strength and flexibility.
Limit driving only to daytime, low traffic, short radius, clear weather
Plan the safest route before driving and find well-lit streets, intersections with left turn arrows, and easy parking.
Ask the doctor or pharmacist to review medicines—both prescription and over-the counter—to reduce side effects and interactions.
Have eyes checked by an eye doctor at least once a year. Wear glasses and corrective lenses as required.
Preplan and consider alternative sources and costs for transportation and volunteer to be a passenger

Family’s or Caregiver’s Role in Driving Cessation

Initially, it may seem cruel to take an older person’s driving privilege away; however, genuine concern for older drivers means much more than simply crossing fingers in hopes that they will be safe behind the wheel. Families need to be vigilant about observing the driving behavior of older family members. One key question to be answered that gives rise to driving concerns is “Would you feel safe riding along with your older parent driving or having your child ride along with your parent?” If the answer is “no,” then the issue needs to be addressed openly and in a spirit of love and support. Taking an elder’s driving privileges away is not an easy decision and may need to be done in gradual steps. Offering rides, enlisting a volunteer driver program, experiencing public transportation together, encouraging vehicle storage during winter months, utilizing driver evaluation programs and other creative options, short of removing the keys, can be possible solutions during this time of transition.

Driving safety should be discussed long before driving becomes a problem. According to the Hartford Insurance survey, car accidents, near misses, dents in the vehicle and health changes all provide the chance to talk about driving skills. Early, occasional and honest conversations establish a pattern of open dialogue and can reinforce driving safety issues. Appealing to the love of children or grandchildren can instill the thought that their inability to drive safely could lead to the loss of an innocent life. Family members or caregivers can also form a united front with doctors and friends to help older drivers make the best driving decisions. If evaluations and suggestions have been made and no amount of rational discussion has convinced the senior to cease driving, then an anonymous report can be made to the Department of Motor Vehicles in each state.

According to the Alzheimer’s Association, strategies that may lead to driving cessation when less drastic measures fail include:

Family meetings to discuss issues and concerns
Disabling or removing the car
Filing down the keys
Placing an “Expired” sticker over the driver’s license
Cancelling the vehicle registration
Preventing the older driver from renewing his or her driver’s license
Speaking with the driver’s doctor to write a prescription not to drive, or to schedule a formal driving assessment

Finally, it is suggested that family members learn about the warning signs of driving problems, assess independence vs. the public safety, observe the older driver behind the wheel or ride along, discuss concerns with a physician, and explore alternative transportation options. Solutions There are a multitude of solutions and recommendations that can be made in support of older drivers. Public education and awareness is at the forefront. An educational program that includes both classroom and on the road instruction can improve knowledge and enhance driving skills.

The AAA Foundation provides several safe driving Web sites with tools for seniors and their loved ones to assess the ability to continue driving safely. These include AAAseniors.com and seniordrivers.org. They also sponsor a series of Senior Driver Expos around the country where seniors and their loved ones can learn about senior driving and mobility challenges and have a hands-on opportunity to sample AAA’s suite of research-based senior driver resources. Information on the Expos is available at aaaseniors.com/seniordriverexpo.

AARP offers an excellent driver safety program that addresses defensive driving and age-related changes, and provides tools to help judge driving fitness. Expanding this program or even requiring participation seems to be a viable entry point for tackling the challenges of driving with the aging population.

CarFit is an educational program that helps older adults check how well their personal vehicles “fit” them and if the safety features are compatible with their physical characteristics. This includes height of the car seat, mirrors, head restraints, seat belts, and proper access to the pedals. CarFit events are scheduled throughout the country and a team of trained technicians and/or health professionals work with each participant to ensure their cars are properly adjusted for their comfort and safety.

Modification of driving policies to extend periods of safe driving is another solution. Older drivers nearing the end of their safe driving years could ‘retire’ from driving gradually, rather than ‘give up’ the driver’s license. An older adult can be encouraged to relinquish the driver’s license and be issued a photo identification card at the local driver’s bureau.

The Alzheimer’s Association proposes several driving assessment and evaluation options. Among them are a vision screening by an optometrist, cognitive performance testing (CPT) by an occupational therapist, motor function screening by a physical or occupational therapist, and a behind the wheel assessment by a driver rehabilitation specialist. Poor performances on these types of tests have been correlated with poor driving outcomes in older adults, especially those with dementia. Requiring a driving test after a certain age to include both a written test and a road test may be an option considered by each state. Finally, continued input and guidance will be necessary from AARP, state licensing programs, transportation planners, and policymakers to meet the needs of our aging driving population.

It is appropriate to regard driving as an earned privilege and independent skill that is subject to change in later life. In general, having an attitude of constant adjustment until an older individual has to face the actual moment of driving cessation seems to be a positive approach. Without recognizing the magnitude of this transition, improving the quality of life in old age will be compromised. Keeping our nation’s roads safe while supporting older drivers is a notable goal to set now and for the future.

Article from Today’s Caregiver.

How to Travel (with greater ease) with Parkinson’s

July 1, 2018 Caregivers, Exercise, Life

For the average person, traveling is a minor frustration. Security lines, delays, crowded airports and cramped and long lines at snack shops and restaurants are par for the course. However, if you’re living with Parkinson’s, those things aren’t just frustrations, they can be so troublesome and aggravating to deal with that you choose to stay at home.

That’s why we decided to reach out to our Davis Phinney Foundation Ambassadors, many of whom are avid travelers, to get their best tips for traveling with Parkinson’s. Armed with this information, when you get out and about this summer, we hope you’ll do so with greater ease.

Medication Management

Managing medications topped nearly everyone’s list. Here are a few suggestions our expert travelers offered.

Bring more than you need. (And always know how to get more in a pinch.) When you’re headed out for a long trip, it’s easy to miscalculate; so, bring extra.

Put your medications in more than one location. This way if something happens with your luggage or you forget a backpack somewhere, you’re covered. Ideally, keep them in your carry-on bags or on you if possible.

Set timers or alarms on your phone so you’re always prompted to take them, even if you’re caught up in another activity.

If you’re going to be in multiple time zones, plan a consistent schedule for taking your medication. Your body doesn’t care that you started in Boston and ended up in LA – it wants Sinemet every three hours.

Sometimes travel days will stretch on and on, far beyond a typical day at home. If your awake time demands it, take an extra dose of something and make sure you account for those extra doses when packing your meds.

If you’re traveling with a companion or care partner, have them carry an extra dose of your medications.

Always carry a complete list of medications with you. And be ready to show them if asked.

Make sure at least one set of your prescriptions are in Rx bottles with labels. If someone in authority questions the contents of your pill bags or bottles and you can’t prove what the medication is, they can take them if they must.

If you have any liquid medications (e.g., the gel form of carbidopa/levodopa for the Duopa pump that’s approved in the US), you’ll need a letter from your doctor. Although you’re allowed to travel with medications greater than the three-ounce limit specified by the Transportation Safety Administration, those medications will be subject to additional scrutiny, and you’ll need the documentation from your doctor as part of that process. Be sure to keep these medications with you in your carry on. Do not put them in your checked luggage.

Planning

Consider traveling by train rather than getting trapped in those tiny airplane seats. Trains have plenty of legroom, there’s no TSA and you get an amazing view.

When buying plane, train or bus tickets, be sure to allow enough time between legs if you have to have a layover so you have the time you need—and more—to get to your next gate.

Travel when you’re at your best. For example, if you feel best in the morning because that’s when your medications offer you the best relief from symptoms, consider flying or traveling at that time.

Make a list of everything you could possibly need for your trip and save it. You might have different lists for bike rides, road trips, weekend getaways, international trips, work trips and long-term travel. Update your lists on your computer each time you travel so they’re ready to print out when you prepare for your next adventure.

Check the weather! If you need to pack a few days before you leave, and you pack for the current weather report, you could get stuck with the wrong clothes. Be sure to check again the day before you leave since weather reports change quickly, and you may need to adjust what you pack. Many people living with Parkinson’s don’t do that well in the heat or in the cold. Not having the correct clothing can be a real problem.

Put all of your paperwork in an easy to access location. This might be in the top pocket or your backpack or maybe the pocket of your pants or jacket.

Consider including in your paperwork an emergency contact list with information about your neurologist, primary care physician and other healthcare providers as well as the names and contact information of family members or other people who should be contacted in case of emergency.

If you tend to run late, avoid stress by getting to the airport extra early. Everything takes longer than you expect, so think through the steps you’ll need to take for airport security, airline boarding, baggage handling, lines at the bathroom, snack shopping, etc.

If you’re going to be out of town for a while, take a quick picture of where you parked or make a note in your phone in case you forget exactly where you left your car when you return.

Read up on flying with a disability so you know what’s available to you.

Getting Around

Carry a cane or a walking stick, even if you think you don’t need it. Stress often makes Parkinson’s symptoms worse, and travel is stressful. Even if you don’t need it, it’s a warning sign to others to not crowd you or run over you in the terminal or on the street.

Arrange for a wheelchair to get through the airport. This can help a lot in crowds or in unfamiliar places.

If you need to use a handicap bathroom, use them when you see them.

Take advantage of TSA Pre✓^®and Clear.

If you need help, ask for it. If help is offered, take it. This includes having someone carry your bags, taking advantage of extra time allowed for boarding, having someone get food and bringing it to you, etc.

Take a disposable plastic grocery bag with you so you can open it up and sit on it on the plane. When you want to get out of your chair, the plastic reduces friction which makes it much easier to get out of your chair.

Practice getting in and out of your airplane seat (or any seat) before you go. One of our Ambassadors Amy Carlson made this great video to show you how to do it with greater ease.

Food & Drink

Have your food items at the ready since you need to separate them when going through security.

Fill your water bottle after security and between flights.

Bring more snacks than you think you’ll need on the plane in case you get stuck, delayed and re-routed and suddenly your two-hour flight turns into a six hour one.

Communication

Remember that communication is on the person with Parkinson’s. As Kathleen Kiddo says, “Nobody can read our cue cards so it’s our job to let them know what’s up.”

Consider wearing or traveling with a card that says something like, “I’ve got Parkinson’s and I need a bit more time and space. Thank you.”

Some people with Parkinson’s carry this card.

I'm not intoxicated, I have Parkinson's

Or this card from the Parkinson’s Foundation.

Sleep and Rest

Slow down and don’t overschedule your days. Choose the activities that are most important to you rather than trying to rush through to hit every possible spot. You will have the most enjoyable time if you learn how to conserve energy so that you have it when it matters most.

Try to time your travel so that you have plenty of time to rest once you arrive at your destination. For example, if you’re traveling to Europe, consider going a day early so you have time to get your body clock adjusted.

If you travel somewhere that has a significant time change, take a one to two-hour nap when you arrive. Go out for dinner and then go to bed at what would be a normal time for the part of the world you’re in. Immediately try to assimilate into the routine of your new environment.

Bring a sleep mask and earplugs. Many people with Parkinson’s have difficulty sleeping. Keeping a sleep mask and a pair of soft foam earplugs nearby can help you get some rest when you’re traveling. You might also consider bringing an inflatable neck pillow for additional comfort.

Clothes

Pack light and feel secure knowing that, unless you’re traveling to a remote area, you’ll be able to pick up anything you need once you reach your destination.

Travel in comfortable clothing that’s easy to get on and off in bathrooms. Slip-on shoes or sandals, shoes that don’t require you to lean over to take them off, are great for airports. And keep an extra pair of socks in your carry on for cold planes.

Wear knee-high compression socks for road trips and air travel. They keep the blood flowing and reduce swelling.

Bring a change of clothes in your carry on bag just in case.

Exercise

Consider bringing a jump rope. It travels well and it offers a great workout. It’s an aerobic and motor challenge, a great exercise for travel.

Whether in a car or on a plane or train, take time to get up and stretch every 30-45 minutes.

As much as possible, try to continue to exercise and do the things that are part of your daily routine for living well while you’re on the road. It can be a challenge when you’re in a different place and don’t have access to the same routine or equipment, but veering too far off schedule can create problems both when you’re traveling and when you arrive home. Adjust as needed, but continue to do the activities that make you feel well.

Miscellaneous

Use a label maker to put your name and cell number on loose objects, like canes.

If you don’t have a handicap placard, get one.

While you’re exploring new areas, consider checking out the local Parkinson’s offerings. Does the place you’re visiting offer something in the way of support for people living with Parkinson’s that you don’t have where you live? If not, do they need your skills? Could you bring something to share with the community you’re visiting?

Don’t be afraid of letting your travel companion(s) know that you’re too tired to do certain activities and you just need time to rest.

If you have DBS, bring the Medtronic device wallet card (or whatever company made yours). You may be asked for it. It’s best to not try and explain DBS to security people. Just say you have a “medical device” or even just say you have a pacemaker as that’s something they hear all the time. Remember, you can’t go through the old style security check machines or let them use wands to check you. Be prepared for a pat down.

Pay for luxuries and conveniences while traveling if you can. They’re designed to make your life easier and if you ever need that, it’s when you’re traveling.

If at all possible, travel with others who get you so well that they know when you need help and when to back off. They know when you need to rest and when you’re ready to go. And they, more than anything, can gracefully manage the unpredictability of Parkinson’s and not let it get in the way of a fabulous trip.

Maintain a sense of humor. Travel is difficult even under the easiest of circumstances. When something goes wrong, and it almost always does, the way you handle it will have a big impact on your physical and emotional well-being. Eventually, you’ll get where you need to go; so, in the meantime, have a good laugh about it.

Finally, while there’s a lot that happens when you travel that you can’t control, you can control your experience. Don’t let Parkinson’s stop you from traveling. As Jill Ater says, “Most people in the word are incredibly understanding and patient. If you like to travel, then it’s part of your living fully with Parkinson’s.”

Article from Davis Phinney Foundation.

Deep Brain Stimulation for Parkinson Disease

June 5, 2018 Education, Life

This article appeared in the Spring 2018 issue of The Network magazine.

Deep brain stimulation (DBS) is an advanced therapy for patients with Parkinson disease (PD) suffering from complications of carbidopa/levodopa treatment. It has been FDA approved for use in PD since 2002 and for tremor prior to that. DBS involves the surgical implantation of a device with electrodes that deliver electrical signals to specific areas within the brain. Once the electrodes are placed, they are then connected to an implanted pulse generator (battery) which is placed under the skin, typically in the chest. When the device is activated, it delivers regular electrical pulses to that area of the brain and results in improvement of PD symptoms. The exact mechanisms of how DBS improves symptoms are not known. However, we do know that it disrupts pathological signals that occur within the brain of PD patients.

Currently, DBS is approved for those patients with a diagnosis of idiopathic PD, who have had symptoms for four or more years and suffer from motor complications that are not controlled with medications. Motor complications refer to the medications not lasting as long (wearing off), levodopa induced dyskinesias (extra, abnormal and involuntary movements) and dose failures.

Individuals who would not benefit from DBS are those with atypical forms of PD, those with signs of dementia and those whose symptoms do not improve with levodopa. Depression and anxiety do not preclude someone from receiving DBS, but these should be addressed, treated and well controlled prior to proceeding.

The process of implanting DBS for patients is a lengthy process. It involves careful pre-surgical screening, two or three surgeries and many follow up programming appointments. The first step is what is called an “Off/On Test.” For this test, the patient comes to an appointment with the neurologist after not taking PD medications from the night before. The patient is then examined in this “Off” medication state. Then, the patient receives a higher than usual dose of carbidopa/levodopa and then re-examined once those take effect.

The next step is to have a formal neuropsychological evaluation performed. This evaluation typically takes about a half of a day and includes extensive testing of memory, language and other cognitive abilities. Once these two preliminary evaluations are complete, most DBS centers hold a multi-disciplinary case conference to discuss these results and the patient’s candidacy for DBS surgery. If there are no contraindications to surgery, the patient will meet with the neurosurgeon who reviews the procedure and the potential risk of surgery. Often times, an additional pre-operative medical evaluation is also required to screen for other medical conditions that could pose additional surgical risks or potential complications. The patient also receives a pre-surgical MRI of the brain to assist with placement of the DBS electrodes.

Most centers perform DBS implantation in two or three individual surgeries. After the DBS device is implanted, the patient then returns to the clinic to turn the device on, typically after three or four weeks. The number of programming appointments needed varies from one patient to the next but can take 6-12 months to reach optimal settings. The battery is checked at routine follow-up appointments and depending on which device is implanted, the battery will need to be replaced from time to time.

Not all symptoms of PD will improve from DBS therapy. The general rule of thumb is if particular symptoms improve after taking carbidopa/levodopa then those symptoms can be expected to improve with DBS. The caveat to this rule are refractory tremors. Tremor in PD can often be resistant to carbidopa/levodopa, but responds well to DBS. In addition, DBS can significantly reduce problems with medication wearing off and dyskinesias. Walking difficulties in PD can be varied and complex. Some of these may respond to DBS but many do not, including balance. Therefore, patients should consult with their DBS physician prior to surgery in regard to their specific walking issues.

Symptoms that are unlikely to improve with DBS are those symptoms that worsen with levodopa, balance, memory problems, speech and swallowing difficulties. DBS can also allow the reduction of some of the PD medications, although it is not realistic to expect to stop all PD related medications after surgery.

It is important to understand that DBS is not a cure however, it is very effective at treating many motor symptoms of PD and improving quality of life.

Ryan T. Brennan, D.O. is an assistant professor in the Department of Neurology at Medical College of Wisconsin.

How to get up from the floor MacGyver Style!

May 1, 2018 Caregivers, Life

Watch how occupational therapist Rhonda promotes creative “out of the box” thinking to inspire new ideas for getting up from the floor after a fall in the home!

Video from HomeAbility.com.

Duopa device among newer treatments for Parkinson’s disease

January 1, 2018 Awareness, Life, Research

Until August, Kern Jackson avoided going out in public.

Parkinson’s disease had progressed far enough that the levadopa pills he’d taken since 2008 weren’t as reliable to ease the symptom of his muscles freezing up. In the past two years, he had to take the medicine more frequently as it wore off quickly, leaving him unable to move.

“I was taking pills every two hours, and during the night,” said Jackson, 70, a retired physician who lives in Medical Lake. “It would take 20 to 45 minutes to be effective, then I’d be moving normally for about an hour. It was hard to plan to do anything.”

So in August, Jackson chose to get a newer Duopa device through Dr. Jason Aldred, a neurologist at Northwest Neurological. The Spokane clinic partners with Inland Imaging, where patients go in for an outpatient procedure to make a small incision in the stomach wall and insert a tube in the small intestine.

The external Duopa device has a pump for continuous delivery via the tube of a levadopa gel, contained in a medication cartridge that patients reload once a day into the device.

According to Aldred, the Duopa device first became available in 2015 after U.S. Food & Drug Administration approval, and it’s among a couple of newer developments for Parkinson’s treatment. The clinic also is participating in two clinical research trials that are attempting to slow disease progression.

The day after his outpatient procedure, Jackson saw Aldred at Northwest Neurological to program the system’s medicine dosage. Clinic staff observed Jackson’s movements for a day during office hours to make sure the new system was syncing correctly for his ability to get around.

Jackson now wears the device in a belted pack around his waist, and he said it’s helped him be more active. He and his wife, Diana, have since traveled by airplane and walked on the Centennial Trail.

“I feel much more confident going somewhere,” Jackson said. “I just went to a men’s retreat in Idaho with my son-in-law, and things went well.”

Although estimates vary, about 1 million people in the U.S. live with the disease, according to the Parkinson’s Foundation. Symptoms include tremor, rigidity, extreme slowness of movement and impaired balance.

Levadopa, now used for more than 50 years to treat Parkinson’s, is often considered the most effective for treatment of motor symptoms.

“Levadopa is turned into dopamine in the brain and replaces dopamine,” Aldred said “That’s huge because dopamine is the natural chemical in the brain that’s low in Parkinson’s patients, so we literally have the ability to replace something that’s low to bring about remarkable improvement in movement, stiffness and tremor.

“However, it doesn’t slow the progression. It treats symptoms remarkably for years or decades. Parkinson’s progresses slowly, but it does progress, and it can cause horrible quality of life issues.”

The Duopa device is offered as a choice for some patients with moderate to advanced Parkinson’s if levadopa in a pill form becomes less reliable, Aldred said. Other patients might be candidates for deep brain stimulation, a therapy that’s been around since 1997, he said.

“As the disease advances for moderate to advanced Parkinson’s, the medicine kicks in and wears off,” said Aldred, adding that also long-term, the disease affects other nerves outside of the brain including in the stomach, so medicine is less effectively moved into the small intestine for absorption.

“We call it dose failure,” he said. “That’s actually a big problem; the medicine is sitting in the stomach and doesn’t move. With the Duopa device, the tube mechanically bypasses the stomach and goes into the small intestine, and the medicine is released physically past the stomach.”

Aldred said the Duopa device is new enough that, so far, just over 30 of its clinic patients have one.

“This is a very new treatment and largely people are slow to warm up to it,” he said, adding that some people might have a stigma about having a tube inserted, a procedure that’s sometimes associated with end-of-life issues.

The small amount of tubing that’s external is flexible, Aldred said, and it’s hidden often under clothing. It can be disconnect for up to two hours if needed.

However, Aldred said current treatments, including Duopa, only partially relieve symptoms, so the two research trials are attempting approaches that might slow or stop the disease’s progression.

Both trials are seeking to stem what is thought to damage cells in the brain that regulate behavior, cognition and movement. A main research focus is finding a way to stop or clear out Lewy bodies, which are abnormal aggregates of protein that develop inside nerve cells in Parkinson’s.

“We have some interesting, cutting-edge NIH, Michael J. Fox Foundation-affiliated clinical research trials,” Aldred said.

One is a vaccine trial using anti-bodies in an attempt that might prevent the spread of Lewy bodies in the brain. A second phase of that study started this month involving a handful of clinic patients.

The other trial will test Nilotinib, a FDA-approved medicine used in treatment for a form of leukemia, but with a fraction of the dose applied for patients with mild Parkinson’s.

“This is a medication that may enhance the clearing of Lewy Bodies from the brain that we think is destructive,” Aldred added.

“We’re trying to get to the point before it spreads,” he said. “That’s a novel way of treating Parkinson’s. These two trials if they’re proven to work, which they haven’t been yet, may be safe and effective ways to slow the disease progression or potentially halt the disease progression.”

There’s also a new device that came out this year for deep brain stimulation, Aldred said. “It was developed by St. Jude’s Medical (since acquired by Abbott). We can aim the electrical current more precisely in the brain to get better effect.”

The DBS treatment requires surgery to implant a wire with four electrodes that deliver an electrical current in the brain to regulate abnormal impulses and smooth out “on time” and “off time” experienced by patients as the impact of medication rises and falls.

The DBS treatment and the Duopa device haven’t been studied head to head on whether one is more effective than the other, Aldred said.

“If someone has moderate cognitive issues, we’d never want to do DBS,” he said.

Alternatively, he added that the Duopa device might be a choice for some patients who aren’t comfortable with DBS.

“I tell patients this is a heavy diagnosis, but there is lot we can do, and one of the things is exercise, ” said Aldred, who encourages physical therapy and regular exercise to maintain better movement and quality of life.

Article from The Spokesman-Review.

Getting a Good Night’s Sleep

September 1, 2017 Caregivers, Life

Parkinson’s disease creates many challenges to getting a good night’s rest. Try these tips to help you get enough rest and sleep, which is an important component of overall health and quality of life.

Getting a Good Night’s Rest

Make a regular, relaxing bedtime routine a habit.
Maintain a regular sleep schedule: get up and go to sleep at the same time every day.
Get plenty of bright light exposure during the day, particularly natural daytime light.
Decrease fluids several hours before bedtime, and go to the bathroom before getting into bed to sleep.
Avoid strenuous exercise, alcohol, nicotine and caffeine within 4 hours of your bedtime.
Use your bed only for sleeping and intimacy with your partner.
Banish animals from the bed!
Customize your sleep environment: invest in a good mattress and pillows.
Set the bedroom temperature at a cool, comfortable level.
Limit daytime napping to a 40-minute NASA nap (yes, tested by astronauts!).
Lie down to sleep only when sleepy. Learn to tell the difference between fatigue and sleepiness.
If you are unable to sleep after 15 minutes, get out of bed and engage in a relaxing activity like listening to music, meditation or reading until you are sleepy.
Turn off the TV. If weaning yourself of a TV habit is difficult, try a relaxation or nature recording.
Keep lighting and noise at low levels when trying to sleep.
Eliminate the common but bad habit of “checking the clock” throughout the night.
Limit prescription sedatives to a 2-week period; instead, try over-the-counter alternatives such as Valerian root capsules.
Sleep as much as needed to feel refreshed, but avoid spending too much time in bed.

Getting into Bed

Approach the bed as you would a chair; feel the mattress behind both legs.
Slowly lower yourself to a seated position on the bed, using your arms to control your descent.
Lean on your forearm while you allow your body to lean down to the side.
As you body goes down, the legs will want to go up like a seesaw.
DO NOT put your knee up on the mattress first. In other words, don’t “crawl” into bed.

Rolling or Turning Over in Bed

Bend your knees up with feet flat.
Allow knees to fall to one side as you begin to roll.
Turn your head in the direction you are rolling and reach top arm across the body.
Some PD patients find that silk sheets help them move better in bed.

Scooting Over in Bed

Bend your knees up with feet flat.
Push into the bed with feet and hand to lift your hips up off the bed. Then shift hips in the desired direction.
Finish by repositioning feet in the direction your hips moved.

Getting Out of Bed

Bend knees up, feet flat on the bed.
Roll onto your side toward the edge of the bed by letting the knees fall to that side. Reach across with the top arm, and turn your head to look in the direction you are rolling.
Lower your feet from the bed as you push with your arms into a sitting position.

Information from Parkinson.org.

1. Which foods can affect your risk of developing Parkinson’s?

2. Could you be malnourished if you have Parkinson’s?

3. How can you maintain your bowel health?

4. How should you take your Parkinson’s medication?

5. Should a dietician be part of your standard Parkinson’s care?

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