parkinson’s disease 101 · partner (parkinson’s for dummies) 4/18/2019 parkinson association of...
TRANSCRIPT
WELCOMEParkinson’s 101 for the Newly Diagnosed
Today’s Topic:Parkinson’s Basics presented by Cari Friedman, LCSW
Parkinson’s Disease 101
4/18/2019 Parkinson Association of the Rockies
Presenter for Today• Cari Friedman, LCSW
• Patient and Family Service Director, Parkinson Association of the Rockies 1999-Present
• 1325 S. Colo Blvd. Suite 204• Denver, CO 80222• (303) 830-1839, Office• (303) 861-1810, Referral Line
4/18/2019 Parkinson Association of the Rockies
Parkinson’s Disease Definition• Is thought to be the result of neuron degeneration in the section of the brain controlling spontaneous movement and balance.
• It is in a group of conditions called movement disorders.
• The result from a loss of the brain’s control of voluntary movement.
4/18/2019 Parkinson Association of the Rockies
Dopamine• Neuro transmitter in the brain.• Relays signals from the Substantia Nigra to the area of the brain collectively Basal Ganglia.
• This area of the brain controls movement, balance and coordination.
4/18/2019 Parkinson Association of the Rockies
Facts about P.D.• Men are 1.5 times more likely to get Parkinson’s Disease
then women.There is no socio economic status that is more likely to get Parkinson’s then others.
• Highest incidence of Parkinson’s is in Western Nebraska.
4/18/2019 Parkinson Association of the Rockies
Example of what this all means• Compare the motor of a car to the “motor” of a person.
4/18/2019 Parkinson Association of the Rockies
Signs and symptoms: • Bradykinesia - profound slowness of movement
• Resting tremor - shaking, worse on the affected side
• Rigidity - marked stiffness, worse on the affected side
• Decreased arm swing on the affected side (asymmetrical)
4/18/2019 Parkinson Association of the Rockies
Signs and symptoms• ● Problems with walking and balance - may experience a
shuffling gait or episodes of • "freezing", being unable to initiate a step forward • ● Micrographia - small, cramped handwriting • ● Masked face - reduced facial expression • ● Dysarthria - lower volume or husky quality to the voice • ● Impaired manual dexterity • ● Depression, anxiety or other mood disorder • ● Some people fatigue easily and have increased PD
symptoms in response to external stress.
4/18/2019 Parkinson Association of the Rockies
Secondary signs and symptoms• Facial mask• Slowed or slurred speech• Small cramped hand writing• Constipation• Urinary incontinence
4/18/2019 Parkinson Association of the Rockies
Non motor signs• Anxiety/depression• Dizziness/light headedness• Sleep disturbance• Executive dysfunction
4/18/2019 Parkinson Association of the Rockies
Distinguishing between P.D. and related conditions:• Essential tremor• Drug or toxin induced parkinsonism• Pseudo parkinsonism• Parkinson-plus Syndrome
4/18/2019 Parkinson Association of the Rockies
Stages of P.D.• Early Stage - Symptoms are mild and often easily explained.
• Moderate - Symptoms on both sides of the body.• Late stage - Generally, need assistance with mobility
• Remember, the length of each stage is unique to each person. You can maintain the early stage status for several years!!
4/18/2019 Parkinson Association of the Rockies
If you have P.D.:• You have a challenge before you.• Many face it every day.• You can get through this!!
4/18/2019 Parkinson Association of the Rockies
Young Onset• Under the age of 50. Hits people in their prime.• Less likely to experience dementia or balance problems.
• Appear to respond well to antiparkinsonian medications. Wear off meds quicker.
• Dyskinesia-uncontrollable movements may affect them more quickly then elderly.
• Less likely to have tremors.• Experience dystonia - cramping in a particular area of the body.
4/18/2019 Parkinson Association of the Rockies
Employment Young Onset• Prognosis is good. Proper management of symptoms
through diet, medication and exercise• Think about demands of job. Might need some
compromise, flexibility.
4/18/2019 Parkinson Association of the Rockies
What causes Parkinson’s Disease?• Combination of ENVIRONMENT:• Pesticides• Paint• Chemicals in developing own film
• GENETIC MARKERS:• Mutated genes• 1997, researchers at National Institutes of Health
discovered that mutations in a gene called SNCA (alpha synuclein) common in several families with a high prevelance of Parkinson.
4/18/2019 Parkinson Association of the Rockies
P.D. is NOT:• Contagious• Curable• Normal for older people or impossible for younger.• Bound to get you if you live long enough• A reason to make immediate life changing decisions.
4/18/2019 Parkinson Association of the Rockies
P.D. is:• Chronic• Slowly progressive over time• Manageable with proper treatment• Life changing for you and your family
4/18/2019 Parkinson Association of the Rockies
Health Care Team• Primary Care Physician• Neurologist• PT, OT, Speech• Pharmacist• Social Worker• Spiritual Advisor• Legal and Financial Advisor• Support Groups• Counselor/Therapist• Family/Friends
4/18/2019 Parkinson Association of the Rockies
Helping treat symptoms• Freezing - Sing song (Happy B. Day), Beam on floor,
Favorite food visualization• Sticky feet - Marching• Voice - Projection• Memory - note taking• Constipation - diet, fluid intake
4/18/2019 Parkinson Association of the Rockies
Visualize the stop sign
• “What if?”
• Why me?• What am I going to be like?
4/18/2019 Parkinson Association of the Rockies
Carpe diem• “Seize the Day”
• Now is your chance to do what you have put on hold…
• Live in the here and now
4/18/2019 Parkinson Association of the Rockies
Care Partner Tips to help PWP• Find out everything you can about P.D....... When you are
ready.• Ask Questions• Take an active role with medical team• Remind each other about other adversities that you
conquered.
• POSITIVE STEPS YOU CAN TAKE:• Keep priorities straight .• Give yourself permission to take a break.• Identify and nurture your personal space.
4/18/2019 Parkinson Association of the Rockies
Dr. Michelle Tagliati’s 10 ways to care for partner (Parkinson’s for Dummies)
4/18/2019 Parkinson Association of the Rockies
• Respect the partnership• Accentuate the positive• Acknowledge life beyond P.D.• Ask, don’t demand• Have a balance in caregiving• Use please and thank yous• Find joy in life• Get over yourself• Accept services as a gift for your care partner• Encourage laughter and dreams
RESOURCES:
• Parkinson’s Association of the Rockies 303-830-1839• www.parkinsonrockies.org
• Davis Phinney Foundation 303-733-3340• www.davisphinneyfoundation.org
• National Parkinson’s Foundation 1-800-473-4636• www.parkinson.org
Michael J. Fox Foundation 1-800-708-7644www.michaeljfox.org
4/18/2019 Parkinson Association of the Rockies