Understanding Parkinson’s disease

1. Understanding Parkinson’s disease Mrs Gisela Stanek Admin & Training Manager Parkinson’s Disease & Related Movement Disorders

2. Defining Parkinson’s DiseaseA Movement Disorder • It is understood that a Dopamine deficiency in the brain is at the root of the matter, yet WHY this initially occurs is less clear. • Parkinson's disease is a disease in a group of conditions called movement disorders – disorders that result from a loss of the brain’s ability to control voluntary movements. Incomplete signals • PD occurs when 80% of dopamine producing cells- the “brain messenger” have died.

3. What causes Parkinson's? • The cause is still unknown, but…… • A degeneration of part of the brain – the substantia nigra.The cells need dopamine to control movement and as the cells die, the brain becomes depleted of this chemical. • Environmental toxins • Accelerated aging • Genetic factors

4. Research • U.S. scientists have discovered that brain networks damaged by P.D. become abnormal a few years before any symptoms appear. • Currently TWO abnormal networks have been discovered – • 1. involved in the mediating the motor symptoms of PD, and • 2. the network regulating the cognitive dysfunction that develops in many patients with this illness. • Symptoms in PD initially occur on one side of the body and as the illness progresses, both sides become involved. Researchers watched the network of the other side of the brain – still not showing symptoms and discovered that side also showed signs of abnormality, but symptoms were delayed be an average of 2 years. • The brain network that governs cognition began showing impairment after TWO MORE YEARS had passed, which was 4 years after the diagnosis.

5. Stem cells; Neurosurgeons have discovered that the transplantation of adult neuro stemcells taken directly from the patient’s own tissue may drastically reduce the disabilitating effects of PD. • Doctor’s took some of the patients Stem Cells and introduced a chemical that forced the cell to change form. They became neurons that secrete dopamine, a critical substance lacking in PD patients. Months later, the new cells were implanted into the patient’s brain. They amplified and multiplied the number by several millions, and the kind of cells that were introduced were mature neurons, whereas initially only a few were harvested. • The study group achieved 80% improvement on their symptoms. But the doctors are cautiously optimistic. It is to early to be sure that this procedure works as well as it seems, but if the patients cases are no fluke, the researchers could be looking at a breakthrough in the treatment of PD.

6. Research cont. • Early signs of PD symptoms include: • Loss of sense of taste and smell • Constipation • people with a history of constipation may be at increased risk of developing PD. A research study has found that about twice as many people get PD than in an age matched group of men and women who did not have the illness.

7. Parkinson’s is NOT: • Contagious • Curable • Normal for older people – or impossible for younger people • A reason to make immediate life-changing decisions • Bound to get you if you life long enough

8. Parkinson’s IS: • Chronic (when you have it, you have it – like arthritis or diabetes) • Slowly progressive (over time – often years) • Manageable (often for years) with proper treatment • Life-changing for you, your family and friends • Learning how to live with it

9. Definition and Symptoms • Although it typically develops after the age of 65, about 15% of patients develop “young-onset” Parkinson’s Disease before reaching the age of 50. • On average , the patient has already suffered from Parkinson’s Disease for 13 years at the time when the typical symptoms manifest themselves. • Symptoms only appear once 80% of the DOPAMINE in the brain has been lost.

10. The primary symptoms of Parkinson’s Disease are • Tremor – involuntary, rhythmic shaking of a limb, head, or the entire body. • This can affect the hands, arms, legs, jaw, and face • It may affect only one part or side of the body – especially in the early stages of the disease. • Its referred to as a resting tremor • Approximately 25% of people diagnosed with PD never develop a tremor

11. Major symptoms • Rigidity-(stiffness or inflexibility of the limbs or joints). Muscles remain constantly tense and contracted. This may cause aching, stiffness, weakness and jerky movements. (incomplete signals) This muscle rigidity experienced often begins in the legs and neck. It affects most patients. • Bradykinesia–(slowness of movement) This is one of the classic symptom of Parkinson’s Disease. They eventually may lose their ability to start and keep moving and after a few years experience • Akinesia- absence of movement or “freezing” resulting in not being able to move at all. • Dyskinesia – increased movements – in PD normally a side effect of medication – “peak time phase” or wearing off phase

12. ……..Symptoms continued • Postural Instability-Impaired balance and co-ordination. A stooped position, with the head bowed and shoulders drooped is typical. They may develop a forward or backward lean and may have falls that cause injuries.

13. Other possible symptoms • “Mask like” face/Changes in expression • Depression • Emotional changes • Memory loss/Slow thinking • Problems swallowing/Chewing • Changes in Speech/Slurred speech • Urinary problems • Constipation

14. Other possible symptoms ………..continuation • Handwriting problems • Difficulty getting dressed • Freezing episodes • Oily/dry skin • Difficulty sleeping • Shuffle walking • Drooling

15. Classification of PD • Idiopathic Parkinsonism • The cause is unknown • Secondary Parkinsonism • Drug induced • Infectious • Metabolic • Psychogenic • Trauma • Toxin

16. Classification of PD - continuation • Parkinson-Plus Syndromes • Corticobasal degeneration in the brain • Dementia Syndromes • Alzheimers disease (progressing memory loss) • Dementia with Lewy bodies (thinking and memory problems are among the early and primary symptoms) • Pick’s disease • Multiple System atrophy syndromes • Shy-Drager Syndromes • Progressive supranuclear palsy • A rare disease that gradually destroys nerve cells in parts of the brain that control eye movement, breathing, and muscle coordination.

17. Illnesses that resemble PD • Heredodegenerative diseases examples: • Huntington’s disease • A rare hereditary condition that causes progressive chorea (jerky muscle movements) and mental deterioration that end in dementia • Wilson’s disease • An inborn defect of copper metabolism in which free copper may be deposited in a variety of areas of the body. Deposits in the brain can cause tremor and other symptoms of Parkinson’s disease

18. Comparison of Parkinson’s Disease & Essential Tremor • Characteristics Parkinson’s Disease Essential Tremor • Family History Usually negative Positive 50% • Alcohol Possible effect Marked tremor reduction • Medical attention sought Early in course Often late in course • Age at onset Mid-adulthood Childhood, adulthood or elderly • Tremor Type Resting Postural, kinetic • Body parts affected Hands and legs Hands, head, voice • Disease course Progressive Slowly progressive; static for long periods • Bradykinesia, rigidity& May be present Never present • Postural instability • Treatment • Levadopa Effective No effect • Primidone No effect Effective • Propranolol May decrease tremor Effective

19. How is it diagnosed? • Clinical diagnosis • No blood test • No brain scan • Detailed history • Careful observation of movements

20. Treatment Options • Parkinson’s Disease can be treated with a variety of medications. However, they may lose effectiveness over time or cause troubling side effects. • The treatments include: • Drug therapies – ( including Levadopa) – a class of drugs with dopamine-like action • Dopamine agonists - a class of drugs that binds the dopamine receptors and imitates the action of dopamine. • Anticholinerics – type of drug that decreases the activity of another neurotransmitter that controls movement. • MAO-B inhibitors – a class of drugs that blocks an enzyme that breaks down levadopa and boosts the effects of Synamet. • COMT inhibitors – a class of drugs that prolongs symptom relief by blocking the action of an enzyme which breaks down levadopa.

21. PD drugs and withdrawal effects: • Reduced dosages of dopamine agonists, drugs routinely used to threat PD, can cause symptoms similar to those experienced by addicts in withdrawal, such as anxiety, panic attacs, pain, dizziness and drug cravings. • These symptoms have been dubbed “ dopamine agonists withdrawal syndrome” and have been linked to a disruption in levels of dopamine in the brain. • “Like cocaine and methamphetamines, these dopamine agonists work by stimulating the reward pathways in the brain”

22. ……….Treatment options continued • Deep Brain Stimulation. • This is a surgical intervention and offers an adjustable, reversible treatment for Parkinson’s Disease. The treatment uses an implanted medical device, similar to a pacemaker, to deliver electrical stimulation to precisely targeted areas of the brain. Stimulations to these areas appears to block signals that cause disabling motor symptoms. • It is a treatment option for people with advanced Parkinson’s disease, Essential Tremor and primary Dystonia. • DBS is adjustable and can be changed over time to match the need for symptom control. • However it does NOT cure Parkinson’s disease, but offers a better quality of life for extended periods and years. It effectively controls symptoms that make day-to-day tasks difficult and which are often the cause of social embarrasment for patients.

23. Deep Brain Stimulation - procedure • The surgeon drills a small hole in the skull and then inserts and electrode (called lead), positioning it in the targeted area of the brain • The surgeon then inserts a pulse generator under the skin in the area of the collarbone. • The neurotransmitter is then programmed to send signals Lobotomies and Palliotomies are no longer the preferred surgical intervention.

24. Treatment options CONCLUSION • Remember that all treatment options are only for symptomatic relief and quality of life. It does not change the sequence of events.

25. Helping yourself with exercise • Regular exercise is one of the most important self-help strategies for coping with PD. The phrase “USE IT - OR LOSE IT” definitely applies when it comes to PD. • Benefits of exercise: • Increase muscle strength • Improve balance • Overcome gait problems • Decrease speech/swallowing problems • Improve mood and lift depression • Reduce muscle and joint injuries • Feel more in control/reduce feelings of isolation

26. Upper Body Strength and Shoulder Flexibility Grasp stick with both hands and lift over head; repeat 10 times

27. Leg Strength Plus Knee and Ankle Mobility • Kick leg out in front with knees straight; repeat 10 times • Raise leg off floor; make 10 circles in each direction with ankle

28. Trunk Twists With elbows raised, twist sideways 10 times on each side

29. Walking • PD patients have no restrictions on exercise if they are able to perform the exercise • Walking improves muscle tone and cardiovascular fitness • Delay the use of the wheeled walkers but if required be aware of the change in the balance base.

30. Nutrition for Good Health Well-balanced, nutritional meals are the key to good general health

31. Special Dietary Considerations for Patients With PD • Increase calories if weight loss is a problem – but avoid obesity • Add butter or margarine to vegetables • Increase intake of nutritional juices or milk • Add legumes to supplement calories and fiber • Avoid high-protein meals after the patient takes a dose of levodopa — protein interferes with levodopa absorption • Avoid supplemental vitamin B6 if patient is taking levodopa without carbidopa • Prevent constipation by increasing fiber in diet • Frequent small meals • Do not take protein and medication together – allow at least 30 min before or 60min after a meal.

32. Difficulty With Swallowing (Dysphagia) • The same muscles that affect speech also affect swallowing • The symptoms of dysphagia are: • Eating slowly • Fatigue while eating • Food stuck in throat or in pocket of mouth • Choking on food or liquid • Difficulty swallowing pills • Difficulty with swallowing increases the risk of weight loss, choking, and aspiration pneumonia • Patient should sit upright and tilt the head forward while eating • Small bites or sips of liquid will help • Thicken liquids if clear fluids cause choking • “Double swallowing” • If patient gets fatigued while eating, serve smaller meals more often • Serve well-cooked, smoother textured food, and more tender cuts of meat • Liquidize food

33. Assistance for Preparing Meals • Preparing food and eating can present challenges for the patient • Many aids are available to improve safety and help with food preparation • A pot stabilizer and light-weight pans help prevent burns • Jar openers and electric can openers help the patient who has decreased strength or dexterity • Specially designed wide-handled eating utensils and plates with rims are available to assist the patient while eating

34. Be patient ― some tasks may take longer to do Help patients to help themselves Ability to perform tasks may fluctuate with symptoms Patient may need more help at certain times of day Caregiver Information Advice for Caregivers Maximize Independence

35. For further information and updates contact us or become a member of our Association.011-787-9287 or 011-326-2112www.parkinsons.co.zakarin.pasa@tiscali.co.zagisela@dystonia.org.za