1. WHAT I NEED TO KNOW AS A PATIENT AND A CAREGIVER
PARKINSON’S DISEASE
WHAT I NEED TO KNOW AS A PATIENT AND
A CAREGIVER
Mustafa Saad Siddiqui, MD
Assistant Professor
Neurology & Neurosurgery
Director Parkinson’s & Movement Disorders Program
Wake Forest University School of Medicine
North Carolina, USA

2. Topics What is Parkinson’s disease (PD)? What causes PD?
Is PD hereditary?
What are the motor features of PD?
What are the non-motor features of PD?
What should I expect in advanced PD?
Is there a cure for PD
Why are my medications no longer working as well?
Can surgery help me?

3. Projected Increase in Prevalence of PD by 2030
Parkinson’s Disease is increasing
Affects 1 in 100 older than 60 years
5-10% diagnosed with PD are less than 40 yrs old
No social, ethnic or geographical boundaries
Projected Increase in Prevalence of PD by 2030
Dorsey et al.2007

4. What is PD Slowly progressive, degenerative disease
Leads to gradual loss primarily of dopamine producing neurons in brain called substantia nigra
Combination of genetic and environmental factors.
Age is the only definite risk factor

5. PD vs Parkinsonism Four cardinal features of Parkinsonism are;
Slowness (bradykinesia)
Stiffness (rigidity)
Shaking (tremor)
Trouble balancing (postural instability)
PD is the most common form of Parkinsonism
However not every patient with Parkinsonism has PD.
A number of other disorders can present with Parkinsonism and can mimic PD in early years

6. PD vs Parkinsonism (cont’d)
The disorders which mimic PD include many diseases collectively called atypical Parkinsonism or Parkinson plus syndromes.
Up to 15% patients originally diagnosed as PD turn out to have atypical Parkinsonism after the initial few years
Atypical Parkinsonism patients do not respond well to PD medications and usually have faster progression of disease.
Diagnosis of PD is made on clinical grounds, usually by a neurologist.

7. Clinical Features of PD
Tremor:
Present in 70%
Resting tremor
Starts on one side and then involves the other side as disease advances
Tremor dominant PD has a slower progression of disease
May get a partial or incomplete response from medications
Bradykinesia (Slowness)
Difficulty in turning in beds, brushing teeth, cutting food, getting up from the chair
If slowness dos not improve with levodopa or Sinemet, diagnosis of PD becomes doubtful.
Rigidity: (Stiffness)
Gait dysfunction;
Slowness, difficulty initiating and when started difficulty stopping
Stooped posture
Shuffling gait
Freezing gait

8. Non-Motor Features of PD
MIND, MOOD AND MEMORY
Depression
Memory problems and dementia
Anxiety and panic attacks
Impulse control disorder (especially after taking Requip / Mirapex)
Get easily emotional
SLEEP
wake up at night when medication effect is wearing off
Restless legs
Act out their dreams
Excessive sleepiness in day
AUTONOMIC
Sweating, feeling hot and cold
low BP on standing up
Problem in erection
SENSORY
Pain

9. CLINICAL PROGRESSION OF PD
PRE-CLINICAL STAGE
REM Behavior Disorder
Loss of smell
Constipation, ED,
low BP, urinary freq
Biomarkers: Smell test, MIBG scan, SPECT, PET
EARLY STAGE
One sided symptoms
Slowness
Masked face
(Stiffness) Rigidity
Shaking (Resting tremor)
Dystonia
Shuffling gait
LATE STAGE
Symptoms on both side
Involuntary dancing movements
Motor (On-off) fluctuations
Speech problems
Some difficulty in swallowing
Poor memory (dementia)
Hallucinations, confusion
Falls
Freezing of gait
The pace of disease in every patient is different

10. Motor Fluctuations

11. Motor (On-off) Fluctuations Seen in Advanced PD
Dyskinesias:
“Dancing movements after pills kick in”
Wearing off:
“ PD symptoms come back before the next pill is due”
On-Off Phenomenon:
On: When Meds relieve symptoms
Off: When Meds do not relieve PD symptoms
“PD symptoms are like a yo-yo all day”
Dose failures
“ Pill takes ‘forever’ to kick in and sometimes none at all”
Freezing gait
“Foot tends to get stuck to the floor when trying to walk”

12. KEY POINTS TO UNDERSTAND IN PD TREATMENT
Can be effectively treated but no cure yet
Neuroprotection? Many treatments are proposed but none is proven.
Many medication options available
Every PD patient is unique and so are the treatments.
What works out for one person might not be the best option for the other.

13. PD Medications cont’d
Meds improve the main features of PD including rigidity, slowness, walking
Tremor may be less responsive or sometimes not responsive to medications
Good treatment benefit for approximately 5 years with regular adjustments of medications
Afterwards, symptoms can be more difficult to control and some patients can experience medication related side effects.

14. Common Side Effects of Medications (varies from one drug to another)
Nausea
Excessive somnolence
Hallucinations
Lowering of BP
Dyskinesias: involuntary dancing movements of limbs and neck
Mental Confusion
Most side effects can be well controlled with medication adjustments

15. Treatment of PD is a balancing act

16. How Can You Help Your Doctor Optimize Your Treatment
Understand your PD symptoms and commonly used PD terms
Understand medication side effects (almost all can be managed with adjustments)
Make notes prior to your appointment.
Think what have been your most bothersome problems in the last one week
Is there a pattern to your problem; when does it happen after taking of pills and when does it resolve. Make a diary of your last one week before apt.
Take someone with you to the appointment who can take notes
Take your medications with you and write down the exact dose and time you take them.
Before calling a doctor’s office, know the PD medications you take, their dosages and their time.

17. Treatment of Parkinson’s Disease
Neuro-protective therapy; are we there yet?
Non-pharmacologic therapy
Medical therapy
Motor symptoms
Non motor symptoms
Surgical therapy
Over the counter / herbal treatments
Restorative treatments- experimental only

18. PD Medications Current PD drugs Sinemet: Levodopa/Carbidopa Requip:
Mirapex
Amantadine
Eldepryl: Selegeline
Azilect: Rasagiline (new)
Permax
Parlodel
Artane: Trihexiphenydyl
Cogentin: Benztropine
Stalevo
Comtan
Tasmar
Apomorphine

19. Surgical Treatment DBS vs Lesion Therapy
Considered when medications fail to provide satisfactory alleviation of PD symptoms
Can effectively treat most but not all motor symptoms of PD
DBS vs Lesion Therapy
Advantages
Reversible
Adjustable
Can be done safely on both sides of the brain so that both sided PD symptoms can be treated
Disadvantages
Very expensive
Requires regular follow up visits for adjustments
Possible hardware related complications
Requires skilled support

20. DBS

21. Supportive Treatment Physical and occupational therapy Speech therapy
Exercise
Nutrition
National websites for PD
Support groups

22. Restorative Therapy (Experimental)
Intraputaminal GDNF, BDNF
Gene therapy
Stem cell therapy
Fetal tissue transplantation

23. Members of a Parkinson’s Disease Program
Neurologist specialized in Parkinson’s & Movement Disorders.
Nurse: specialized in Parkinson’s disease
Speech therapist
Physical and Occupational therapist
Clinical trials for newer PD treatments
Education

24. Plenty of Hope for Future
PD is one of the most researched neurological diseases
Very effective medical and surgical treatments
Stem cells, gene therapy, growth factors hold promise
Understanding your PD, only can help you make the best treatment choices

25. Be a fighter and never lose hope
Thank You