BRAIN.png

Managing the Diagnosis

A Parkinson’s diagnosis often results in a flood of emotions, particularly when the diagnosis comes in the prime of life - as it does with YOPD. Maintaining emotional health is as important as medical management, physical health and diet.

Know Your Network of Professionals

Professionals you may need to address various Parkinson's symptoms

  • Movement Disorder Neurologist

  • Physical Therapist 

  • Occupational Therapist 

  • Speech Language Pathologist 

  • Sleep Specialist 

  • Psychiatrists

  • Neuropsychiatrists

  • Psychologist

  • Neuropsychologist 
     

What is the difference between a Neurologist and a Movement Disorder Specialist? 

A neurologist is a specialist in the anatomy, function and organic disorders of the central and peripheral nervous system. A neurologist may treat patients with as many as 100 neurological conditions, including PD.

 

A Movement Disorder Specialist is a neurologist with additional training in and specializes primarily on PD and movement disorders. 

When do I need to see a Physical Therapist, Occupational Therapist and Speech Language Pathologist?

People with Parkinson’s should be evaluated by a physical therapist, occupational therapist and speech-language pathologist at initial diagnosis and: 

  • Every 6-12 months or more often, as necessary 

  • If person reports or demonstrates worsening of balance, ambulation, freezing of gait, pain or any other mobility issues 

  • If person reports or demonstrates worsening performing activities of daily living such as dressing, bathing, eating, or toileting 

  • If person reports or demonstrates lack of adherence to exercise program 

  • If person reports or demonstrates communication and/or swallowing problems 

When should I contact my Neurologist/ Movement Disorder Specialist?

People with Parkinson’s are encouraged to contact their neurologist if any of the following occurs: 

  • New or worsening medical symptoms 

  • Driving concerns 

  • Questions or concerns regarding medication 

  • If you have never been seen by neurologist, preferably a movement disorder neurologist 

  • Unexplained or significant weight loss 

  • If a care partner reports difficulty assisting you

  • Worsening thinking, language or memory issues

  • Neuro Ophthalmologist 

  • Urologist 

  • Orthopedic Specialist

  • Nutritionist

  • Social Worker 

  • Family Counselor 

  • Elder Law Attorney

  • Disability Attorney

  • Financial Planner

Maintaining Mental Wellness

Coping skills to help with a YOPD diagnosis

It may be difficult at first, but developing a positive attitude is critical. 

  • Keep an open mind - PD may slow you down, but it won’t kill you

  • Give thanks for being alive and make the best of each new day

  • Explore, recognize, and embrace the positives in your life

  • Think about what you can do, not what you can’t do

  • Plan short- term, achievable goals and build on your successes

  • Trust yourself to handle any challenges that PD can bring 

  • Simplify your daily schedule - make time to nourish your physical and emotional well-being

  • Focus your energy on whatever enhances your strength, inner peace and happiness

  • Build a team of people who are truly dedicated to supporting you through your journey - the bigger the network the better

  • Acknowledge your strengths but willingly ask for help when you need it

External sources to help in dealing with negative emotions associated with YOPD

There are many sources of emotional help. Sharing your experience with those on a similar journey can help ease stress, foster new friendships, prevent isolation and provide assurance that you are not alone.

 

RESOURCES:

Hotlines/Helplines

The Parkinson Foundation (PF) maintains a Helpline Monday through Friday from     9 a.m. to 8 p.m. ET. The PF Helpline is staffed by nurses, social workers and therapists. 1.800.4PD.INFO (1-800-473-4636) 

helpline@parkinson.org

 

Online Forums/Social Networks

American Parkinson Disease Association (APDA) supports an online discussion forum in partnership with Smart Patients so people with Parkinson’s and their care partners connect with each other to share, interact, and learn from each other in a safe, supportive environment 

www.smartpatients.com/apda

 

Blogs

Many exist - do an internet search for “parkinsons support blogs” to find one that’s a good match for you. Check out Best PD blogs.

 

YOPD Mentoring

YOPD Mentoring is a program started in 2019 by Livramento Delgado Boxing Foundation, Inc. (“LDBF”) partnering with Parkinson Foundation GA and American Parkinson’s Disease Association (APDA).

 

Do you need a mentor? Do you want to be a mentor? Click here to sign up,

 

Support Groups

APDA sponsors local support groups throughout the US where people with PD and their caregivers can meet to share camaraderie and information 

Find Local Resources & Support Near You | APDA

 

PD-specific Exercise Programs

These programs are taught by dedicated trainers committed to helping you live a better life with PD. No need to feel conspicuous due to PD symptoms because everyone understands.

 

You will receive support and encouragement, and the exercise will help improve your symptoms and slow the progression of the disease. pdboxing.org.

Click here for PD Exercise Program recommendations: https://www.boxingforparkinsons.org/classes/

 

Click here for Fitness Counts: A Body Guide to Parkinson's Disease: https://www.parkinson.org/pd-library/books/fitness-counts

More information is available.

Resource: A Mind Guide to Parkinson's Disease

Mood Disorders

Mood disorders and PD

Mood disorders - particularly depression, anxiety, and apathy - are even more common in PD than in other chronic diseases. This is primarily because PD changes the brain chemistry in areas of the brain that produce dopamine, norepinephrine and serotonin - all chemicals that regulate mood, energy and motivation.  Mood disorders may present up to five years prior to the common motor symptoms (tremor, bradykinesia/slowed movement, stiffness/rigidity, postural instability) that ultimately lead to a PD diagnosis.  

 

Mood disorders may also be attributed to other factors associated with having PD:

 

Psychological: 

  • Negative feelings about living with a chronic illness

  • Social isolation or lack of a social support network

 

Environmental:

  • Severe stress

  • Side effects from medications
     

Depression, Anxiety and Apathy

Depression, anxiety, and apathy can coexist or can occur singly. Educate yourself, your caregiver, your family about PD and mood changes so that you can proactively look for the signs. Immediately notify your doctor if you experience any of these, so that they can recommend the right medical treatment.

 

Depression is a mental state with feelings of severe despondency and loss of interest or pleasure from activities once enjoyed.  Other symptoms may include:

  • Persistent sadness

  • Crying

  • Decreased attention to hygiene, medical and health needs

  • Feelings of guilt, self-criticism and worthlessness

  • Increased fatigue and lack of energy

  • Change in appetite or eating habits

  • Loss of motivation

  • Feelings of being a burden

  • Thoughts about disability, death and dying

  • Sleep difficulties

  • Suicidal thoughts

 

Anxiety refers to intense, excessive and persistent worry and fear about everyday situations.

 

Other symptoms may include:

  • Accelerated heart rate

  • Rapid breathing

  • Excessive sweating 

  • Fatigue 

  • Feeling restless/edgy

  • Muscle tension/cramps

  • Sleep difficulties

  • Change in/loss of appetite

  • Anger and irritability

  • Inability to concentrate

 

Apathy is a disorder of diminished motivation to do, complete or accomplish anything. 

 

Other symptoms may include:

  • Lack of feeling/emotional detachment

  • Indifference; loss of interest and concern about things that should be of great importance

  • Low energy levels/reduced physical activity

  • Reduced involvement in personal relationships

  • Poor performance at school or work

  • No desire to learn new things, meet new people, or have new experiences

  • Dependence on other people to plan activities

Diet and Nutrition

Foods for PD

  • Foods high in Antioxidants: molecules that clear out free radicals (substances that are potentially toxic to cells). Free radicals contribute to a condition known as oxidation stress, which is associated with PD.    

  • Veggies: artichokes, kale, okra, bell peppers, potatoes

  • Fruits: berries, pears, apples, grapes 

  • Whole grains

  • Legumes: kidney beans, edamame, lentils

  • Nuts: pecans, walnuts, hazel nuts 

  • Dark chocolate                                                                                         

  • Supplements: Turmeric, CoQ10, Vitamin D 

 

Diet and PD medications

PD medications may have interactions with foods, other medications, vitamins, and supplements. 

 

Carbidopa/Levodopa competes with protein for absorption in the intestine. This can cause some PwP to experience poor responsiveness to the medication – its effectiveness may be diminished, resulting in the need for increased dosage, or the medication may take longer and longer to become effective. 

 

Suggestions to combat this issue: 

  • Eat meals that are high in protein, such as meat, fish or cheese, in the evening. 

  • Take on an empty stomach- 30 minutes before or 60 minutes after a meal.  If nausea occurs, combine with carbohydrates: cracker, toast or oatmeal. 

  • Dopamine agonists do not require any dietary adjustment. 

  • MAO-B Inhibitors increase a substance called tyramine. High blood pressure can result when MAO-B Inhibitor medications are mixed with foods that contain high amounts of tyramine. 

 

Food and supplements to avoid when on MAO-B Inhibitors: 

  • Cured, fermented or dried meat or fish 

  • Aged cheeses 

  • Fermented cabbage: sauerkraut, kimchi 

  • Soybean products, including soy sauce 

  • Red wine and tap beer 

 

Iron supplements decrease absorption of levodopa. Allow at least two hours between taking iron and levodopa. 

 

Foods that can help some of the non-motor symptoms of PD

Constipation can interfere with medication absorption and effectiveness.  In addition to regular exercise, it is recommended to: 

  • Drink 6-8 glasses of water per day 

  • Drink warm liquids in the morning 

  • Dietary source of fiber: fruits (with peel), vegetables, legumes, whole grains and cereals, add gradually 

  • Eat foods containing probiotics: yogurt, kefir, miso soup, sauerkraut, pickles 

  • Eat dried foods: prunes, figs, dates, apricots, raisins 

  • Eat fresh fruits: peas, plums, apples 

 

Nutritional concerns with PD

Bone thinning: Studies show that Parkinson’s also increases the risk of bone thinning. With the frequency of falls combined with bone thinning can lead to injury in PwP. Eating meals rich in bone-strengthening nutrients such as magnesium, calcium and vitamins D and K are important. Regular sunlight can increase vitamin D. Walking and other weight-bearing exercises can help strengthen bones. 

 

Dehydration: Parkinson’s medications can lead to dehydration. Dehydration can lead to confusion, weakness, balance issues, respiratory failure, kidney problems, low blood pressure. 


 

The gut microbiome

A microbiome is a universe of bacteria mostly inside the gastrointestinal tract.  The microbiome can reach the brain through the vagus nerve and the circulatory system. The incidence of Parkinson’s is higher in people with ulcerative colitis, inflammatory bowel disease and Crohn’s disease.  

 

Research has found a link between bacteria in the gut and PD. PD “may” start in the peripheral nervous system in the gut and spreads via the nerves into the brain. One of the earliest symptoms of the disease, often before diagnosis, is constipation. Studies have found toxic forms of the protein alpha-synuclein in the colon of PwP. PwP have an altered microbiome, with higher levels of H-Pylori bacteria.

 

Weight or gain weight with PD 

Weight gain may occur as a result of reduction in exercise/activity, lifestyle changes and or dietary changes in the first few years after diagnosis. Weight gain may also be a side effect of Deep Brain Stimulation (DBS) surgery or of dopamine agonists medications, which can cause compulsive eating behavior.  Weight gain can result in heart disease, diabetes, metabolic syndrome, joint damage and other complications so it is important to discuss with your doctor if weight gain occurs. It often can be corrected by medication change.

 

Weight loss may initially occur as a result of loss of taste and smell causing depressed appetite. It is important to monitor because extreme weight loss can result in malnutrition. This can lead to a weakened immune system, muscle wasting, loss of vital nutrients, risk for other diseases and even death. 

 

Unintentional weight loss of more than 5% within one month or more than 10% within six months and/or low body weight should receive medical attention. 

 

Depression and anxiety can also cause significant weight gain or loss.

More Resources for YOPD

medical_white.png
THE
DIAGNOSIS
MANAGING THE DIAGNOSIS
heart_white.png
RELATIONSHIPS
noun_webinar_WHITE.png
YOUR CAREER
noun_boxing_white.png
EXERCISE
& YOPD