CurePSP hosted a day-long conference in mid-November. One of the topics covered was nutrition, including weight loss, dysphagia (swallowing problems), and healthy eating for us all. Much of the lecture notes are of interest to those dealing with Parkinson’s disease (PD), not just progressive supranuclear palsy (PSP). However, the short sections on frontotemporal dementia and impulsive eating do not apply to PD. 

The nutrition topic was addressed by three speakers with Massachusetts General Hospital, including a movement disorder specialist, a dietician, and a clinical research coordinator.

The movement disorder specialist speaker, Dr. Anne-Marie Wills, provided an introduction to nutrition, including the weight loss associated with PSP and strategies to minimize the effects of PSP on nutrition. (Of course, this applies to PD as well.)

The dietician speaker Jamie Lynn Garry, discussed dysphagia (swallowing problems) and general healthy eating strategies.

The clinical research coordinator, Mansi Sharma, shared three easy-to-swallow recipes for neurodegenerative disease patients for this holiday season. While I am sharing this summary after the holidays, these recipes might still be of interest to caregivers and patients who want to try the recipes. Those recipes were for a Pumpkin Pie Smoothie, a Sweet Potato Pudding, and a Classic French Creamy Spinach Puree. The ingredients and step-by-step instructions are in the YouTube recording below (begins at 7:55).

The three lectures were recorded and posted on CurePSP’s YouTube page here.

The speakers’ slides are able to be downloaded from here.

Stanford Parkinson’s Community Outreach has a webpage with a lot of resources on nutrition in PD here.

I listened to the three speakers and am sharing a summary below.

– August Besser

---

“Nutrition” – Lecture Notes

Speakers:

• Dr. Anne-Marie Wills (movement disorder specialist)
• Jamie Lynn Garry (dietician)
• Mansi Sharma (clinical research coordinator), all with Massachusetts General Hospital

Conference Host: CurePSP

November 13, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

Anne-Marie Willis’ presentation (starts at 0:00):

Weight Loss in Progressive Supranuclear Palsy (PSP)

• Weight loss begins in the early stage of PSP, and patients usually lose weight over time
• May be due to dysphagia, loss of appetite, depression

Dysphagia (swallowing impairment)

• Swallowing impairment occurs in up to 80% of PSP patients. 
• Earlier dysphagia is associated with a worse prognosis of PSP
• Dysphagia is one of the first symptoms in 16% of PSP patients
• Both the oral and pharyngeal phase can be affected
• Dysphagia is associated with malnutrition, dehydration, aspiration pneumonia, and worse outcomes. There is not sufficient data on the frequency of malnutrition in PSP, and no data on whether treatment of dysphagia prolongs survival.

Signs of Dysphagia

• Sialorrhea (drooling)
• Prolonged mastication (chewing)
• Fatigue with mealtimes
• Prolonged length of mealtimes
• Oral cavity residue (check after double-swallow)
• Nasal regurgitation
• Wet-sounding vocal quality
• Coughing, throat-clearing, or choking during oral intake
• Dysphagia can be silent

Dysphagia – Strategies

• Chin-down posture and effortful swallow exercise can be used to better swallowing function
• Food modifications (in case of liquid aspiration): use pureed or semisolid food, avoid mixed textures, eat uniform textures, thicken liquids (nectar or honey thick)
• In some patients, levodopa may improve swallowing function
• In advanced stages with severe dysphagia, tube feeding via PEG can be considered

Related Disorders: Frontotemporal dementia (FTD)

• Aberrant eating behavior – particularly impulsive eating and mealtime disturbances – have been observed in FTD and in PSP
• Impulse eating is described as: “Mouth stuffing and rapid drinking” in approximately half of the PSP research cohort
• Nutritional impact of impulse eating has not been quantified

Impulsive Eating

• To manage impulsive eating, caregivers are asked to: lock food away, reduce access to large portions, monitor food-seeking or stealing, providing healthy alternatives to sweets, ask individual to slow down during meals, modify diet texture as necessary, have proper body positioning for safe swallowing

Parkinson’s disease

• Mediterranean diet: high intake of olive oil, legumes, vegetables, and fruit. Lower intake of meat, poultry, and animal fats. Associated with reduced risk of PD. No associated dietary patterns with PD progression.
• Declining Body Mass Index: associated with worse disease progression

In Summary

• Work with your health care providers to: try to avoid weight loss; eat a diet high in olive oil, legumes, vegetables, and fruit; watch for signs of dysphagia.
• If you do have signs of dysphagia, work with Speech Language Pathology to prevent aspiration
• Use texture modification and mealtime strategies to make swallowing safer

Mansi Sharma’s recipe demonstrations (starts at 7:55):

Pumpkin Pie Smoothie

Ingredients:

• 1 banana
• ½ cup canned pumpkin puree
• ½ cup vanilla Greek yogurt
• 1 tsp. pumpkin pie spice
• ½ cup whole milk
• A dash of ginger
• 1 tbsp. maple syrup
• Combine all ingredients in a blender and blend until smooth. 

Sweet Potato Pudding

Ingredients:

• 1/3 cup rolled oats
• ½ cup fortified soymilk or rice milk
• 1 cup cooked sweet potato or yam
• ¼ tsp. cinnamon
• Combine all ingredients in a blender and blend until smooth. 

Classic French Creamy Spinach Puree

Ingredients:

• Black pepper
• Nutmeg
• Salt
• 3 cup spinach leaves
• ½ cup soft brie cheese
• Rinse 3 cups spinach leaves, and cook over medium-high heat uncovered for about 3 minutes, until wilted. Add to a blender.
• Add ½ cup soft brie cheese to the blender. Add black pepper, salt, and nutmeg to taste. Blend until smooth.
• This can be served cold immediately or hot in an oven. Make sure to cook in a deep baking dish.

Jamie Lynn Garry’s presentation (starts at 14:46):

Healthy Eating for PSP and Caregivers

• Food can be an important source of pleasure as well as nourishment
• Keep the pleasure in food and try to avoid the stress

Mediterranean Diet

• 2-3 servings of vegetables per day
• 2-3 servings of fruit per day
  • 3 servings of fish per week
  • 3 servings of beans per week
• Abundant use of olive oil
• Choose whole grains
• Moderate amounts of poultry, fish, and low-fat dairy
• Limit sweets, processed and red meat
• Continue moderate alcohol intake with meals from red wine

Aim for a Variety of Fruits and Vegetables

• Fresh, frozen, canned, dried, and 100% juice count
• Aim for at least 2-3 cups of vegetables and 2 cups of fruit a day

Choose Whole Grains or Starchy Vegetables over Refined Grains

• Whole grains have more fiber and more natural vitamins and minerals than refined grains
• Make at least ½ your grains whole grains
• Try whole wheat bread or pasta, brown rice, quinoa, oatmeal, bulgur
• Starchy vegetables can also be a good alternative (potatoes, turnips, winter squash)

Focus on Healthy Fats

• Choose plant-based fats, instead of animal-based fats
• Aim to eat fats from plant sources, such as olive oil, vegetable oils, nuts, and avocados. Fatty fish are also a great source of healthy fats.
• Avoid eating saturated fats which come from animal sources such as red meat, high-fat dairy, and butter

Focus on Plant Proteins and Fish

• Fish and shellfish are lower in saturated fat than meat and poultry
• They are also a good source of Omega-3 polyunsaturated fats
• Beans and legumes are also lean proteins high in fiber, vitamins, and minerals
• Nuts and seeds are also good sources of healthy fats

Limit Red and Processed Meats

• Limit red meat to no more than 2 times per month (per the Mediterranean Diet)
• This includes: beef, pork, sausage, bacon, lamb, processed meats, hot dogs, deli meats, smoked and cured meats

Limit “Discretionary” Calories

• Added sugars
• Solid fats
• Alcohol

Difficulty Self Feeding

• Work with Occupational Therapist (OT) and Speech Language Pathologist (SLP)
• Positioning of food
• Assistive devices
• Choosing foods that are easier to eat

Taste Changes

• Often develop a preference for sweet foods
• Choose naturally sweet foods
• Add healthier options to sweets
• Try other “strong” flavors (spicy, sour)
• Manage expectations

Dysphagia

• Work closely with a Speech Language Pathologist (SLP)
• Try modified textures and potentially thickened liquids
• Consider a feeding tube if dysphagia progresses

Early Food Modifications for Trouble Swallowing

• Dairy: milk, milkshakes, yogurt, soft sliced cheeses, soft cheeses (blue, feta, mozzarella), cottage cheese
• Fruits: fruit juices or nectars, canned fruit, ripe or fresh fruit (avoid skin)
• Vegetables: soft, cooked vegetables
• Meat/Poultry/Fish/Legumes: soft/moist meat, fish, poultry (gravy to help soften if needed), casseroles, eggs (soft cooked or scrambled), sandwiches with soft bread and shaved deli turkey or ham, tuna salad or egg salad without celery or raw vegetables, canned soft meats and fish (like tuna and chicken), moist/soft legumes, smooth peanut butter or other nut butters
• Starches: cold dry cereals that soften well in milk, cooked cereal, French toast, pancakes, soft breads or muffins (no hard rolls), soft pasta, white rice
• Fats and Oils: butter, margarine, cream, oil, mayonnaise, salad dressing, mashed avocado, cream cheese, whipped topping, sauces, gravies

Weight Loss

• Eat calorically dense foods (high calorie/high fat)
• Eat small, more frequent meals
• Drink more calories
• Consider a tube feed for supplemental calories

Considering a Tube Feed

• If it lines up with treatment goals
• If eating enough becomes: unsafe, too difficult, too tiring, too time consuming, no longer enjoyable
• Can be used 100% of the time or in conjunction with eating by mouth

Pacing of Eating

• Timing meals
• Practice mindful eating
• Verbal cueing
• Avoid distractions
• Chew and swallow one bite before offering or taking the next
• Smaller more frequent meals

General Takeaways

• Work closely with your health care team
• Enjoy food to nourish your body and for pleasure
• “Eat food, not too much, mostly plants” – Michael Pollan
• “You can have everything, just not all at once.” – Oprah