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

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?

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

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

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

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.

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

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

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

Motor Fluctuations

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”

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.

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.

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

Treatment of PD is a balancing act

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.

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

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

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

DBS

Supportive Treatment Physical and occupational therapy Speech therapy Exercise Nutrition National websites for PD www.parkinson.org www.pdf.org http://wemove.org http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm http://www.apdaparkinson.org/user/index.asp Support groups

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

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

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

Be a fighter and never lose hope Thank You