Who doesn’t feel overwhelmed sometimes by the bustle of the holiday season? Add to that the responsibility of caring for a frail elderly loved one, and burnout is simply a concept waiting to become reality. But wait. If you’re one of the millions of households providing care for a family member or friend, there is hope. Stress doesn’t have to take the starring role in your family festivities this year.
If you’re like the increasing number of Americans who are trying to offer a sense of dignity to your parent(s), include them in seasonal events and help them stay in their own home, safety is your number one priority.
Most accidents happen at home in unsupervised situations. This season, enlist the help of older children or a spouse, playing games with (Great) Grandma and (Great) Grandpa while you change beds, do the laundry and other chores. Instead of decorating to the hilt, keep holiday décor simple. Eliminate the need for extension cords on the floor and “declutter” your notion of decoration: use colorful paper garlands strung high instead of breakable objects placed within reach. Remove anything a child or a frail elderly person may stumble over. Replace candles with bright centerpieces of fruit or flowers. Keep candy to an absolute minimum to prevent sugar highs and lows.
With the emphasis on “good cheer” during the month of December, the options are many. But don’t wear yourself out trying to make the holidays “happen” for everyone. If you don’t get yourself in a situation where you “overdo” you’ll be more alert to hazards—even emotional ones. Holidays bring emotions to the surface because they hold the most intense memories for your loved ones, and some may not be pleasant. You may find that tears fall for no apparent reason, or that a frail elderly parent suddenly seems gruff or annoyed just when you think everything is fine. Sometimes, the emotional stress of the season makes a frail aging parent seem distant, just when you want to draw them close. We never know what precipitates these reactions; we only have to deal with them. That’s not an easy task, but first and foremost, a caregiver must keep her own emotional balance.Set a few guidelines as to what you expect from yourself. From the very start, set your intention to be positive during the holidays, and to respond with calmness to upsetting scenarios. Sure, things may come to the boiling point at times, but the resolve not to react in like manner will bring the most effective results. People don’t intend to be grumpy, distant or to give you a hard time. These behaviors may simply be a way of asking for help. The best way to give it is by remaining patient, offering consistent encouragement, and setting safe boundaries.
You cannot make everyone happy at all times, but you can take responsibility for your own emotional highs and lows. Preserve a few moments each day all for yourself. Take a half-hour break while your children entertain the frail elderly with Christmas music from the 30s, 40s and 50s or interview their grandparents about favorite holiday memories. You might enlist the services of a home-help organization to do some of the household chores while you go grocery shopping or simply take a walk. Professional caregivers can also help alert you to signs of stress or special needs that you might not recognize on a day-to-day basis, curtailing accidents or emotional spills.
Keep in mind that a frail person may tire more easily during the holiday season, need more sleep as the days grow shorter, and also need their own “space.” Ask for their help; ask them to let you know what they need and how they want to celebrate. Their answers may surprise you. Above all, an older frail person may crave our respect and our admiration. When we praise the good things they’ve accomplished in life, make certain they know that we appreciate their legacy, and tell them we’re happy they’re with us, things will be a lot easier. If they seem only to complain more, well, just grease the wheel with a little praise for yourself. Send positive messages to yourself out loud and mix in a few more affirmations for them.
The holidays are a great time to slow down instead of speed up. Think about all the things you can let remain undone instead of all the things you need to do. Give yourself a challenge to match the tempo of your frail elderly relatives or friends, and see if you don’t enjoy the season more. And after all, isn’t that what the holiday season is all about?
Jane McClenaghan, a nutritional therapist and author based in Belfast, Northern Ireland, runs cookery classes and diet clinics which help people living with Parkinson’s.
This two-course meal, from her book ‘The Vital Nutrution Cookbook’, is packed full of anti-inflammatory ingredients like cinnamon and ginger, a helping of fish for omega-3 and baked nectarines to offer an easy-to-swallow treat for dessert.
First course – Thai fishcakes with zingy salsa
Thai fishcakes with zingy salsa made by nutritional therapist Jane McClenaghan
Ingredients 5-7oz. white fish 4 scallions, chopped 1 inch fresh ginger, grated 1 tsp Thai green curry paste 1 egg, beaten 2 tbsp chopped cilantro 1 tbsp flour Juice and zest of a lime Black pepper 1 tsp coconut oil
Method
Finely chop the fish and place in a large bowl with the spring onions, ginger, curry paste, fish sauce, egg and cilantro.
Mix well and then stir in the flour, lime juice and zest and season with black pepper. The mixture may be a bit wet at this stage. You can add a bit more flour if you like.
Divide into four generous portions. Put a little flour on your hands and form each portion into a ball. Flatten slightly and fry in the coconut oil for five to eight minutes until golden brown and cooked through.
Serve with a green salad or my zingy salsa (below).
For the salsa
½ cucumber, finely chopped ½ red onion, finely chopped 2 medium tomatoes, chopped 1 red pepper, finely chopped ½ fresh chilli, finely chopped 2 tbsp fresh cilantro, chopped 1 tbsp chives, chopped Juice of 1 lime 1 tbsp olive oil Freshly ground black pepper
Method
For the salsa, place all the ingredients in a bowl and mix well together. Season to taste.
To serve, pile the salsa high on your plates alongside the fishcakes.
Dessert – Cinnamon nectarines with vanilla scented yogurt
Cinnamon nectarines with vanilla scented yoghurt by Jane McClenaghan
Ingredients (serves 2)
1-2 tsp agave syrup 2 nectarines, halved with stone removed ½-1 tsp ground cinnamon ½ vanilla bean 2 tbsp Greek yogurt
Method
Preheat your oven to 350F.
Drizzle a little agave syrup over each nectarine half and sprinkle with cinnamon. Cover with tinfoil and bake for 15-20 minutes until soft.
Slice the vanilla bead lengthways and, with the tip of a sharp knife, scrape out the seeds and stir into the Greek yogurt.
Serve the nectarines hot or cold with a drizzle of agave syrup and a dollop of the vanilla scented Greek yogurt.
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.
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.”
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.”
Blood caffeine levels could be promising diagnostic biomarkers for early-stage Parkinson’s, Japanese researchers reported in the journal ‘Neurology’ earlier this month.
The study found that people with Parkinson’s had lower levels of caffeine and caffeine metabolites in their blood than people without the disease, at the same consumption rate.
Caffeine concentrations also were decreased in Parkinson’s patients with motor fluctuations than in those without Parkinson’s. However, patients in more severe disease stages did not have lower caffeine levels.
The study’s authors, Dr David Munoz, University of Toronto, and Dr Shinsuke Fujioka, Fukuoka University, suggested that the “decrease in caffeine metabolites occurs from the earliest stages of Parkinson’s.”
They added: “If a future study were to demonstrate similar decreases in caffeine in untreated patients with Parkinson’s […] the implications of the current study would take enormous importance.”
We know that people with Parkinson’s can often experience non-motor symptoms such as anxiety and panic disorders. However, there is evidence to suggest that a diet rich in certain nutrients can help alleviate some of these difficulties.
Iron-rich foods
Animal foods with a high iron value include beef, beef liver, pork, poultry, and seafood such as halibut, haddock, perch, salmon, tuna, clams, and oysters. These contain heme iron, which is found in animal meat and is more readily absorbed than plant-derived, non-heme iron. Too much iron can interfere with levodopa absorption, and because these foods are also high in protein, they can block levodopa. If you use levodopa, be sure to take it at least 30 minutes before eating these foods. Fish and seafood are good choices for people with Parkinson’s because they also contain brain-supportive omega-3 fatty acids.
Plant foods high in iron include soybeans, tofu, lentils, spinach, chard, garbanzo beans. These have the non-heme form of iron, which is less well absorbed than heme iron. Acidity helps boost iron absorption, so having lemon juice or vinegar salad dressing, or an orange, in the same meal with beans and leafy greens will help you get the most iron absorption from the plant food.
According to the Food and Nutrition Information Center of the United States Department for Agriculture (USDA), the Recommended Dietary Allowance (RDA) for iron is 8mg per day for men aged 19 and older, 18mg per day for women between the ages of 19 to 50, and 8mg per day for women aged 51 and older.
Food high in vitamin B6
Tuna, turkey, beef, chicken, salmon, sweet potato, potatoes, sunflower seeds, spinach and other dark leafy greens, and bananas are all good sources of vitamin B6. Tuna, beef, poultry, salmon, and spinach are good iron sources also, so these foods provide the benefit of both nutrients.
The RDA of vitamin B6 is 1.3mg for men between the ages of 14 to 50 and women between the ages of 19 to 50. Men above the age of 50 require 1.7mg, while women of the same age need 1.5mg.
Foods rich in vitamin D
There are few foods that contain vitamin D, and of these, salmon is by far the best – a salmon steak of 115g contains 128% of the RDA. Sardines, cow’s milk, tuna, egg yolks, and shiitake mushrooms have smaller but still important amounts. Salmon is a great food to eat two to three times weekly and it’s also a source of vitamin B6 and iron too. Sunlight is a very good source of vitamin D. When sunlight is available, exposing your face and arms for around 10 minutes a day will provide sufficient amounts.
The RDA for vitamin D for all adults between the ages of 19 to 70 years is 600 IU per day. For those above the age of 71 the RDA is 800 IU per day. If taking supplements choose the vitamin D3 form, which is more easily absorbed than the D2 form.
You’re washing your hands, using Purell like crazy, and sneezing into your elbow. Now add these superfoods to your diet for an extra flu-fighting punch.
Flu-fighting foods
It takes more than an apple a day to keep the doctor away. It turns out that eating some pretty surprising nutrients will help keep your immune system on guard.
You can ensure your body and immunity run smoothly by rounding out your plate with plenty of colorful servings of fruits and veggies, plus 8 to 10 glasses of water a day, at the very least. The following ingredients can add extra flu-fighting punch to your winter meal plan.
1. Yogurt
Probiotics, or the “live active cultures” found in yogurt, are healthy bacteria that keep the gut and intestinal tract free of disease-causing germs. Although they’re available in supplement form, a study from the University of Vienna in Austria found that a daily 7-ounce dose of yogurt was just as effective in boosting immunity as popping pills. In an 80-day Swedish study of 181 factory employees, those who drank a daily supplement of Lactobacillus reuteri—a specific probiotic that appears to stimulate white blood cells—took 33% fewer sick days than those given a placebo. Any yogurt with a “Live and Active Cultures” seal contains some beneficial bugs, but Stonyfield Farm is the only US brand that contains this specific strain.
Your optimal dose: Two 6-ounce servings a day.
2. Oats and Barley
These grains contain beta-glucan, a type of fiber with antimicrobial and antioxidant capabilities more potent than echinacea, reports a Norwegian study. When animals eat this compound, they’re less likely to contract influenza, herpes, even anthrax; in humans, it boosts immunity, speeds wound healing, and may help antibiotics work better.
Your optimal dose: At least one in your three daily servings of whole grains.
3. Garlic
This potent onion relative contains the active ingredient allicin, which fights infection and bacteria. British researchers gave 146 people either a placebo or a garlic extract for 12 weeks; the garlic takers were two-thirds less likely to catch a cold. Other studies suggest that garlic lovers who chow more than six cloves a week have a 30% lower rate of colorectal cancer and a 50% lower rate of stomach cancer.
Your optimal dose: Two raw cloves a day and add crushed garlic to your cooking several times a week.
4. Shellfish
Selenium, plentiful in shellfish such as oysters, lobsters, crabs, and clams, helps white blood cells produce cytokines—proteins that help clear flu viruses out of the body. Salmon, mackerel, and herring are rich in omega-3 fats, which reduce inflammation, increasing airflow and protecting lungs from colds and respiratory infections.
Your optimal dose: Two servings a week (unless you’re pregnant or planning to be).
5. Chicken Soup
When University of Nebraska researchers tested 13 brands, they found that all but one (chicken-flavored ramen noodles) blocked the migration of inflammatory white cells—an important finding, because cold symptoms are a response to the cells’ accumulation in the bronchial tubes. The amino acid cysteine, released from chicken during cooking, chemically resembles the bronchitis drug acetylcysteine, which may explain the results. The soup’s salty broth keeps mucus thin the same way cough medicines do. Added spices, such as garlic and onions, can increase soup’s immune-boosting power.
Your optimal dose: Have a bowl when feeling crummy.
6. Tea
People who drank 5 cups a day of black tea for 2 weeks had 10 times more virus-fighting interferon in their blood than others who drank a placebo hot drink, in a Harvard study. The amino acid that’s responsible for this immune boost, L-theanine, is abundant in both black and green tea—decaf versions have it, too.
Your optimal dose: Several cups daily. To get up to five times more antioxidants from your tea bags, bob them up and down while you brew.
7. Beef
Zinc deficiency is one of the most common nutritional shortfalls among American adults, especially for vegetarians and those who’ve cut back on beef, a prime source of this immunity-bolstering mineral. And that’s unfortunate, because even mild zinc deficiency can increase your risk of infection. Zinc in your diet is very important for the development of white blood cells, the intrepid immune system cells that recognize and destroy invading bacteria, viruses, and assorted other bad guys, says William Boisvert, PhD, an expert in nutrition and immunity at The Scripps Research Institute in La Jolla, CA.
Your optimal dose: A 3-oz serving of lean beef provides about 30% of the Daily Value (DV) for zinc. That’s often enough to make the difference between deficient and sufficient. Not a beef person? Try zinc-rich oysters, fortified cereals, pork, poultry, yogurt, or milk.
8. Sweet Potatoes
You may not think of skin as part of your immune system. But this crucial organ, covering an impressive 16 square feet, serves as a first-line fortress against bacteria, viruses, and other undesirables. To stay strong and healthy, your skin needs vitamin A. “Vitamin A plays a major role in the production of connective tissue, a key component of skin,” explains Prevention advisor David Katz, MD, director of the Yale-Griffin Prevention Research Center in Derby, CT. One of the best ways to get vitamin A into your diet is from foods containing beta-carotene (like sweet potatoes), which your body turns into vitamin A.
Your optimal dose: A half-cup serving, which delivers only 170 calories but 40% of the DV of vitamin A as beta-carotene. They’re so good, you might want to save them for dessert! Think orange when looking for other foods rich in beta-carotene: carrots, squash, canned pumpkin, and cantaloupe.
9. Mushrooms
For centuries, people around the world have turned to mushrooms for a healthy immune system. Contemporary researchers now know why. “Studies show that mushrooms increase the production and activity of white blood cells, making them more aggressive. This is a good thing when you have an infection,” says Douglas Schar, DipPhyt, MCPP, MNIMH, director of the Institute of Herbal Medicine in Washington, DC.
Your optimal dose: Shiitake, maitake, and reishi mushrooms appear to pack the biggest immunity punch; experts recommend at least ¼ ounce to 1 ounce a few times a day for maximum immune benefits. Add a handful to pasta sauce, sauté with a little oil and add to eggs, or heap triple-decker style on a frozen pizza.
Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage your chronic illness.
We’ve put together a list of some of the best mobile apps for managing your chronic illness:
Medisafe is an app that helps patients manage medications. It helps with dosage and reminds you when you need to take your meds, increasing adherence rates. The information can also be shared with your healthcare team and pharmacy.
Pain Diary works for anyone with a chronic illness. It allows patients to chart and score pain as well as record and track other symptoms of the disease such as fatigue and mood swings. This app also has a feature where patients can connect with others living with the same chronic illness and swap best practices.
ZocDocis a handy app if you’ve recently been diagnosed with a chronic illness, since one of the first things you’ll need to do is find a doctor to treat you. ZocDoc allows you to search for local specialist doctors who are approved by your insurance company. The app will even tell you when the doctor is available to see you.
My Medical Info is an app that stores all your relevant health history and insurance details. This makes filling out those endless forms a little less challenging, since you won’t have to rely on your memory for all the details. The app will also allow you to program in doctors’ appointments and all the medications you’re taking.
Fooducate helps you keep track of your diet and make healthy choices. Eating well is an integral part of managing any chronic illness and this app will help you to eat the right foods and get you to a healthy body weight. You can program in how many calories you want to consume a day and then add in the food choices you make, the app will work out the nutritional values of everything you eat and tell you how many calories you’ve consumed. It also works in conjunction with many fitness apps to add in details of any physical activities and calories burned.
Sleep Cycle helps you get the best out of your sleep. The app analyzes how much sleep and the quality of sleep you get each night and you can also have the alarm set to wake you when you’re in your lightest sleep, leaving you feeling less groggy and more refreshed each day.
Parkinson’s is a complicated condition and while many people with Parkinson’s live a long and healthy life, this is not the case for everyone. A recent study found that possibly as many as 60% of people with Parkinson’s are at increased risk for malnutrition.1 “Increased risk” doesn’t mean that 60% of people with Parkinson’s will develop malnutrition, it just means that there is a higher possibility of malnutrition – but it is a good idea to be aware of all its possible causes, so that you can minimise the risk.
The risks and how to minimise them
Below are descriptions of some common nutrition-related concerns that may occur as a result of Parkinson’s, followed by suggestions that could help to resolve the problems.
Sense of smell One of the first symptoms of Parkinson’s can be loss of the sense of smell, a sense that is necessary in order to taste food. While lack of taste and smell doesn’t always affect appetite, it can become a factor.
Suggestions: Choose favourite or especially desirable foods. Focus on flavour intensity – lemon, garlic, soy sauce, cinnamon, cloves, nutmeg, herbs; and “mouthfeel” – foods that are crunchy, creamy, chewy or have other appealing textures that make them more agreeable when scent and flavour are lacking.
Feeling nauseous Medications used to treat Parkinson’s often cause nausea.
Suggestion: Ginger is very effective at counteracting nausea. Keep some fresh ginger in the freezer and use it to make ginger tea, or chew a slice of ginger. Keep a container of crystallised ginger handy, to take while on errands or travelling. Even powdered ginger can be used to make tea.
Medication regimes Medications may cause loss of appetite.
Suggestion: Discuss this with your physician. If medication-induced, it may be possible to try a different medication.
Low mood Depression is common among people with Parkinson’s and can affect willingness to eat.
Suggestion: Discuss this with your physician. Depression can be due to deficiency of B vitamins, vitamin D, omega-3 fatty acids, or other nutrients – a blood test will show whether this is the case and, if so, supplements should help. In some cases, depression can be alleviated by attending regular counselling sessions, however, some people may require antidepressant medication.
Late-stage Parkinson’s The stage of Parkinson’s can be a factor, because as it progresses, symptoms often become more severe. In addition, motor fluctuations are more likely to occur in later-stage Parkinson’s. ‘Off’-time, dystonia, and dyskinesia can make it difficult both to eat, and to time medications and meals.
Suggestion: Ask your doctor about a longer-lasting medication, such as Stalevo, or Rytary, or a pump, so that ‘off’ time is reduced and the timing of medications and meals is more regulated closely.
Calorie deficit Tremor and dyskinesia can burn extra calories.
Suggestions: If using levodopa, divide the day’s protein needs between morning, midday, and evening meals, taking levodopa about 30 minutes before each meal. In between meals, eat small, non-protein or low-protein snacks, such as fruits and juices, whole-grain crackers or biscuits, tomato or vegetable soup. These add extra calories without blocking levodopa absorption.
Swallowing and choking issues Swallowing problems increase fear and risk of choking.
Suggestions: Ask your doctor for a referral to a speech pathologist, who can evaluate your swallowing function, and determine whether you are at risk for choking. If so, the therapist can demonstrate safe swallowing techniques, and recommend chopped, puréed, or otherwise altered foods and liquids. You should also be referred to a dietitian, who can assess your needs and ensure you are getting enough protein and other nutrients.
Motor problems in hands Rigidity and loss of manual dexterity makes it hard to manage eating utensils.
Suggestion: Ask your doctor for a referral to an occupational therapist, who can recommend specially designed plates, bowls, drinkware, and eating utensils that are easier to manage.
Slowed eating Chewing and swallowing become tiring, cause slowed eating and inability to finish meals. It may take several hours to finish one meal, so the person is unable to consume enough calories during a day to maintain health.
Suggestion: Choose foods that require little chewing. Include nutrient-rich blended smoothies, minced, mashed or pureed meats, fish, vegetables and fruits such as meatloaf, applesauce, mashed peas, potatoes, carrots, or baby foods. If this is insufficient, ask your doctor about placement of a feeding tube. In many cases, individuals can still eat and enjoy food by mouth; but the feeding tube ensures sufficient fluids to prevent dehydration, and enough protein, vitamins, and minerals for complete nutrition.
Seeking helpFor some people, Parkinson’s may present barriers to good nutrition. These can be difficult to deal with. Being aware of such possibilities is important, so that you can prepare as needed. That includes close communication with your neurologist, and the help of specialised health professionals, for their advice and support. With preparation and an experienced healthcare team, you can overcome, – or even prevent – common causes of malnutrition and related illness.
References 1Tomic S1, Pekic V2, Popijac Z3, Pucic T3, Petek M2, Kuric TG2, Misevic S3, Kramaric RP2. What increases the risk of malnutrition in Parkinson’s disease? J Neurol Sci. 2017 Apr 15;375:235-238.
Kathrynne Holden, a registered dietitian, has specialised in Parkinson’s disease nutrition for over 20 years. She has contributed to two physicians’ manuals on Parkinson’s, written the booklet ‘Nutrition Matters’ for the NPF (with some of her work for them archived here). Now retired, she maintains a website on Parkinson’s topics.
Parkinson’s disease may start in the gut and spread to the brain via the vagus nerve, according to a study published in the April 26, 2017, online issue of Neurology®, the medical journal of the American Academy of Neurology. The vagus nerve extends from the brainstem to the abdomen and controls unconscious body processes like heart rate and food digestion.
The preliminary study examined people who had resection surgery, removing the main trunk or branches of the vagus nerve. The surgery, called vagotomy, is used for people with ulcers. Researchers used national registers in Sweden to compare 9,430 people who had a vagotomy over a 40-year period to 377,200 people from the general population. During that time, 101 people who had a vagotomy developed Parkinson’s disease, or 1.07 percent, compared to 4,829 people in the control group, or 1.28 percent. This difference was not significant.
But when researchers analyzed the results for the two different types of vagotomy surgery, they found that people who had a truncal vagotomy at least five years earlier were less likely to develop Parkinson’s disease than those who had not had the surgery and had been followed for at least five years. In a truncal vagotomy, the nerve trunk is fully resected. In a selective vagotomy, only some branches of the nerve are resected.
A total of 19 people who had truncal vagotomy at least five years earlier developed the disease, or 0.78 percent, compared to 3,932 people who had no surgery and had been followed for at least five years, at 1.15 percent. By contrast, 60 people who had selective vagotomy five years earlier developed Parkinson’s disease, or 1.08 percent. After adjusting for factors such as chronic obstructive pulmonary disease, diabetes, arthritis and other conditions, researchers found that people who had a truncal vagotomy at least five years before were 40 percent less likely to develop Parkinson’s disease than those who had not had the surgery and had been followed for at least five years.
“These results provide preliminary evidence that Parkinson’s disease may start in the gut,” said study author Bojing Liu, MSc, of the Karolinska Instituet in Stockholm, Sweden. “Other evidence for this hypothesis is that people with Parkinson’s disease often have gastrointestinal problems such as constipation, that can start decades before they develop the disease. In addition, other studies have shown that people who will later develop Parkinson’s disease have a protein believed to play a key role in Parkinson’s disease in their gut.”
The theory is that these proteins can fold in the wrong way and spread that mistake from cell to cell.
“Much more research is needed to test this theory and to help us understand the role this may play in the development of Parkinson’s,” Liu said. Additionally, since Parkinson’s is a syndrome, there may be multiple causes and pathways.
Even though the study was large, Liu said one limitation was small numbers in certain subgroups. Also, the researchers could not control for all potential factors that could affect the risk of Parkinson’s disease, such as smoking, coffee drinking or genetics.
The study was supported by the Swedish Research Council for Health, Working Life and Welfare, the Parkinson Research Foundation in Sweden, and the U.S. National Institutes of Health.
To learn more about Parkinson’s disease, visit www.aan.com/patients.
The American Academy of Neurology is the world’s largest association of neurologists and neuroscience professionals, with 32,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy.
Recent Comments