2. Today I Will Cover
• The Journey
• Compassion
• Own Your Care
• Build Your Professional Service Team
• Build Your Support Team
3. The Journey
• Parkinson’s disease is highly individualized
• No two patients will have the exact same set of symptoms
• Not everyone moves through all stages of Parkinson’s disease
• Adjusting throughout the journey
• New Normal
4. Compassion
• Give yourself time
• Allow the emotions & Be kind to yourself
• Accept
• Remember your spirituality
• Life is worth living with Parkinson’s disease
• What am I experiencing right now?
• Avoid comparisons
• What do I want to do to live the quality of life that I desire?
5. Own Your Care
• Be an Informed Consumer
• Be Organized
• Advocate
• Build Your Professional and Supportive Team
6. Be an Informed Consumer
• Identify Your Parkinson’s
• Motor / Non-Motor / Cognitive / Mood / Financial
• Get Educated
• Go Online
• Ask the professionals
• Look for what pertains to you
• Join Groups
• Support groups
• Discussion groups
7. Be Organized & Prepared
• Keep Journal
• Current Medications with detailed instructions for taking them and possible effects
• All doctor information and emergency information
• Keep record of mood changes and proximity to events or medications
• Daily difficulties (physical, cognitive and emotional)
• Any changes
• Organize labs and lab results
• Record surgeries / Hospital stays / Allergies
• Be ready for emergencies
• Emergency Medication Supply and Hospital Bag
• PA Emergency door hanger and pamphlet
8. Advocate
• Use Your Knowledge
• You know what you need
• Can Be Uncomfortable
• Learn the Skills
• Be clear and precise
• Use “I” statements
• Be a broken record but be prepared to listen
• Use appropriate channels to report issues
• Remember Your Rights
9. Build Your Professional Service Team
• What Services Do I Need?
• Speak to a healthcare professional
• Bring your journal
• What Services Can I Afford?
• Contact Your Insurance Company
• Evaluate Potential Team Members
• How to hire worksheet
• How to address dissatisfaction
• Comfort
• Transfer of Information between
Doctors
• Respect and Respectable
• Answer Questions
• Take all symptoms seriously
• Contacting your team in between
appointments
• Back up staff with knowledge
10. Build Your Support Team
• Select Them
• Availability
• Knowledge of Your Parkinson’s
• Uplifting
• Motivator
• Respite provider
• Patient
• Remove Negativity
• Stress can cause increase in
symptoms
• Family is not always supportive
• Crisis?
• Remember Professional & Community
Based Supportive Services!
11. Helpful Tips
• Be Prepared for Doctors visits
• Be Prepared for the Hospital
• Revise Your Journey as Needed
• YOU CAN AND WILL BE IN CONTROL OF YOUR JOURNEY
The theme for 2015 and the Parkinson's Association
as we grow and expand our services
We are all on a Journey from the time we are born.
1980’s Mary Mowry started PA I&R Center after husband Dr. Robert Mowry Dx with PD
1989 she started separate non-profit PA and sat as Executive Director until 2001
For a more planned and fluid journey
Cannot plan for everything but you can plan for anything
Journey = long road = life = were all on a journey
PD are the pebbles which we may or may not stumble over from time to time
Acceptance does not mean to give up, surrender or like this situation
Acceptance=Acknowledge and give yourself the power of being able to do something about the experience you are having.
Suffering (Grief, Misery, Sorrow, Anguish, Woe) – angry at diagnosis, wants something different, believes it can be changed / unacceptance of reality
Pain – to be expected
More details to come
Best way to take action is to identify your parkinsons – no 2 people are alike
What area are you most effected motor or non-motor? – roles can change,
Are the symptoms from medications or PD?
Can not Can’t – advocate for thing you can do
Maintain independence by continuing to DO
Sometimes abilities change and people have to delegate tasks which they used to be in charge of, its not easy
Get help with how to have those conversations
Have people with PD experience come to your facility to explain patient care or answer questions
Remember to stay in the NOW
Researching PD can be overwhelming
Be specific and look up information and treatment options that match your symptoms
Doctor relies on your accurate depiction of changes to determine the need for intervention
You may catch a pattern the professionals have missed
All your doctors can have access to your records and current situation anytime they see you.
Does your treatment match your needs?
Care partner and PWP keep separate journals
Psychologist / Therapist
Psychiatrist
Lawyer
Neurologist
Speech Therapist
Physical Trainer
Physical Therapist
PCP
Cardiologist
Urologist
Social Services / Case Management
LOUD/BIG training
Movement Specialist v. Neurologist
A movement disorder specialist is a neurologist who is trained specifically to treat movement disorders. Movement disorder specialists must complete their residency training in neurology and then complete additional training (a fellowship) in movement disorders.
Physical therapy v. exercise
Physical therapists are healthcare professionals who diagnose and treat individuals of all ages who have medical problems or other health-related conditions through Exercise, Massage, Mobilization, Education and Manipulation
Are you comfortable speaking with this person?
Are they willing to communicate with your other doctors?
Do you feel respected by this person?
Are questions answered to your satisfaction or do you come away from a visit feeling that you have not been taken seriously?
Can you get in touch with this person between visits?
Does this person have a knowledgeable/experienced back up in lieu of his/her absence?
You may even decide to interview
"What happens if I have new symptoms, or if questions arise between visits?“
“How many years experience do you have with Parkinson’s Disease?”
Thank you
What stage are you in?
Important to maintain observation of PWP
Now to start creating the new normal
Reward Deficiency Syndrome: Symptoms (http://mentalhealthdaily.com/2014/10/20/reward-deficiency-syndrome-causes-symptoms-treatment/)
Those with reward-deficiency syndrome tend to experience a variety of symptoms. These symptoms cannot necessarily be used to “diagnose” the condition because there is no specific diagnostic criteria. However, those who are aware of the condition may realize that they may be dealing with a case of reward-deficiency.
Addiction(s): People with RDS may develop addictions as a way to feel engaged with life. Using drugs or gambling may make someone with this condition feel some degree of pleasure and/or thrill. This allows them to feel more “normal” and experience the same level of reward that others get from more mundane activities. Therefore certain addictions such as using drugs or gambling may become the focal point of the individual’s life.
Lack of anticipation: Most people get excited while anticipating an event such as the first day on a new job, first day at school, going on a vacation, or a wedding. For most people, the excitement leading up to these events is significant. Those with reward-deficiency may not feel any excitement leading up to these major events. Essentially the excitement that normal people experience is heavily muted for those with RDS.
Lack of pleasure: Due to the significantly reduced number of D2 receptors, many individuals don’t get a thrill from any activity. Certain events such as going on a big date, taking a vacation, or getting a good grade on a test may not make a person with RDS feel good. Some individuals with this condition may experience very little pleasure from “rewarding” activities, while others may experience none at all.
Motivational deficits: People with RDS don’t just have a few less D2 receptors, they tend to be severely deficient compared to a normal individual. It is estimated that they have 40% fewer D2 receptors in specific areas of the brain such as the nucleus accumbens. This leads people to be less excited about pursuing goals and staying motivated. The functioning of their brain’s reward system is essentially nonexistant.
Reduced arousal: People with RDS tend to lack arousal and excitement during activities that would be considered thrilling to a normal individual. Reduced levels of arousal are associated with less production of dopamine as well, which may also contribute to the RDS. Activities that result in high levels of stimulation such as using drugs may increase the person’s arousal and make them feel better.
Thrill seeking: Based on Blum’s research, people with RDS tend to seek out the biggest thrills possible, given their circumstances. They do this because it allows them to feel pleasure and raises the amount of dopamine in their brain.
Self-Medicating with Reward-Deficiency Syndrome
Individuals with reward-deficiency syndrome often self-medicate with illicit drugs. This allows them to experience adequate levels of “pleasure” that they aren’t able to feel from other activities. It allows these individuals to function well and takes away their agitation, low mood, and anxiety.
Common addictions for those with RDS:
Alcohol
Foods
Carbohydrates
Sugars
Gambling
Nicotine
Opioids
Porn
Sex
Stimulants
Remember:
stay non judgemental
Never, cant, always
Acceptance:
does not mean agree, like, desire
How willing you are to move forward
Solutions
Name them / list them
Don’t have to be attempted that day
Last stage in the grief process
Denial
Anger
Bargaining
Depression
Acceptance
Role Changes: Bill payer, Normal Driver, Appointment maker, Meal maker
I cant ride a bike is the same as I can jog
neither one is riding a bike
