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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? 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 EARLY STAGE • REM Behavior Disorder • One sided symptoms • Loss of smell • Slowness • Constipation, ED, • Masked face • low BP, urinary freq • (Stiffness) Rigidity • Biomarkers: Smell test, MIBG scan, SPECT, PET • 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 • 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_diseas e/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