Parkinson's disease - my friend

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Mr Kanu Kamdar, an expert patient, talks about how to live a productive life with Parkinson's disease

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Parkinson's disease - my friend

  1. 1. Parkinson - My Friend Rotary Club of Bombay Harbour Kanu (Harshad) J. Kamdar Member, PDMDS (Parkinson's Disease & Movement Disorder Society)
  2. 2. What is Parkinson's Disease? <ul><li>It is a neurological condition that exists when the brain does not produce enough of a chemical, dopamine. It is a progressive and the condition deteriorates with time. </li></ul><ul><li>The same circuit that affects movement can affect more cognitive functions like planning and decision-making. </li></ul><ul><li>The dosage of medication is increased as the previous dose is inadequate to control symptoms. Medications have a number of side effects </li></ul>
  3. 4. Famous Faces of PD <ul><li>Margo MacDonald </li></ul><ul><li>Michael J Fox </li></ul><ul><li>Muhammad Ali </li></ul><ul><li>Adolf Hitler </li></ul><ul><li>Pope John Paul II </li></ul><ul><li>George Fernandes, our fiery and tahelka fame former Defence Minister who has now developed Alzheimer. </li></ul>
  4. 5. Who develops PD? <ul><li>The risk of developing Parkinson's increases with age. </li></ul><ul><li>Symptoms often appear after the age of 50. But one in 20 people diagnosed is under the age of 40. </li></ul><ul><li>Symptoms develop gradually, and it can be almost 20 years before they become obvious enough for a person to consult a doctor. </li></ul>
  5. 6. Symptoms of PD Any one or more of the following: <ul><li>Tremors </li></ul><ul><li>Loss of co-ordination </li></ul><ul><li>Slow Movement </li></ul><ul><li>Rigidity </li></ul><ul><li>Impaired balance & gait </li></ul><ul><li>Fatigue </li></ul><ul><li>Sleep Disorders </li></ul><ul><li>Constipation </li></ul><ul><li>Dementia or loss of memory (partially) </li></ul><ul><li>Slurred speech </li></ul><ul><li>Difficulty in gulping or swallowing </li></ul><ul><li>Salivation during day </li></ul><ul><li>Sudden freezing while walking </li></ul><ul><li>Impulse control disorder </li></ul>
  6. 7. The challenges of PD <ul><li>Loss of stability or balance </li></ul><ul><li>Weakness in the legs or shuffling feet. </li></ul><ul><li>Loss of the voice or hearing </li></ul><ul><li>Difficulty in gulping food </li></ul><ul><li>Freezing while walking </li></ul><ul><li>However most noticeable challenge is tremors </li></ul><ul><li>People as young as 17 are living with Parkinson’s disease and struggling to cope in a society that refuses to believe they suffer from an “old person’s disease’’. </li></ul>
  7. 8. What causes PD? <ul><li>No definite causes are yet identified. </li></ul><ul><li>Genetic i.e. hereditary or mutated genes </li></ul><ul><li>Exposure to chemicals, pesticides, lead, etc. The Vietnam War vaterens used a pestcide - Agent orange and today many suffer from PD </li></ul><ul><li>There are a lot of misconceptions about Parkinson's. People think everyone with the disease shakes, but not everyone has tremors. It affects everyone differently. </li></ul>
  8. 9. Side effects of PD Medication <ul><li>Levadopa - increased risk of Skin Cancer </li></ul><ul><li>Syndopa - constipation </li></ul><ul><li>Certain drugs like Miramax cause compulsive habits like shopaholic, borrowing beyond ability to repay, which then leads to shop lifting in worst cases, sex addiction, which then leads to rape in worst cases </li></ul><ul><li>All in all, a very confusing story and no one has a definite answer. </li></ul>
  9. 10. Misguiding research adds to the confusion <ul><li>Recently the Journal of Neurology reported that the longer you smoke, the less likely you are to develop Parkinson’s disease. </li></ul><ul><li>So what are they telling us? Remember, sometimes back doctors said drinking a glass of alcohol every day was good for your heart. Smoking prevents Parkinson’s disease. Marijuana is good for glaucoma. Sex is good for your prostate. </li></ul><ul><li>You know, screw health care. Let’s party! </li></ul>
  10. 11. How I combat PD? <ul><li>Staying active mentally, physically and socially helps, as does absorbing oneself in his family, and work. </li></ul><ul><li>One of the most important natural medical treatments is to be happy, as it releases adrenaline and serotonin . My default position is to be very positive and not to worry too much about the future. </li></ul><ul><li>I find physiotherapy, yoga, pranayama, a healthy lifestyle, prayers, meditation and relaxation help. </li></ul>
  11. 17. Parkinson my friend <ul><li>You may ask “Who will befriend such a complicated disease and if one has - why?” </li></ul><ul><li>Seven years ago I was diagnosed for PD. Naturally I was depressed and in the process had a few falls. In 2004, I broke my humerus and my doctor immediately joked “You may damage or even fracture your humerus but don't lose your sense of humor.” So I told my PD you can't overpower me, but you can stay as a friend. </li></ul>
  12. 18. Childhood & Youth <ul><li>Normal childhood </li></ul><ul><li>No major illnesses except </li></ul><ul><ul><li>Amoebic dysentery, </li></ul></ul><ul><ul><li>Whooping cough </li></ul></ul><ul><ul><li>Typhoid </li></ul></ul><ul><li>Education wise – M.Sc. from Bombay University </li></ul><ul><li>Studied abroad and started working life </li></ul>
  13. 19. Working Years <ul><li>Returned to India in 1961. Worked as an executive for a major business house. Had a life full of stress, dining & wining. </li></ul><ul><li>In 1976 left position to start my own business. Started world's largest ship breaking yard at Alang near Bhavnagar in 1983. </li></ul><ul><ul><li>For starting Alang operations had to survey seashore and climbed the 100 ft. light house on several occasions over a period of six months </li></ul></ul><ul><li>In 1986 started energy contracting and retired in 2000 </li></ul>
  14. 20. Major health problems <ul><li>1976 Appendix surgery </li></ul><ul><li>1983 CAD bypass in USA </li></ul><ul><ul><li>Change of diet and post surgery life time medication. Took medication from 1983 to 1990, stopped and restarted in 2000 and tapered it completely by Aug 15, 2005 </li></ul></ul><ul><li>2002 Prostrate surgery and normal recovery </li></ul><ul><li>2003 Found my new friend, PD </li></ul>
  15. 21. Initial Days with PD <ul><li>2003 diagnosis for PD led to depression and loss of balance causing fracture of right humerus. </li></ul><ul><li>Neurologist went on increasing medication till I was at 3 tabs of Syndopa 110. About 50% of the maximum dosage which added to complications </li></ul>
  16. 22. Present state of PD <ul><li>Tremors limited to right hand and noticeable but are manageable. I don't pay attention to them. </li></ul><ul><li>I am strict with myself on exercise, yoga, pranayam and of course walking. I ensure that I log five miles or eight kms everyday between sunrise and sunset. I maintain a log on my computer as I believe 365 - 1 = 0 </li></ul>
  17. 23. Accept challenges & responsibilities <ul><li>An average student in school & college, was in variably getting the Honorable Mention award for the topper with no blue or red lines and who topped the rest. </li></ul><ul><li>Changed from technical to Administration at UCL </li></ul><ul><li>By nature was always willing to accept challenges </li></ul><ul><li>Have accepted the challenge & befriended PD without medicines but with life style changes. </li></ul>
  18. 24. Self Talk and Goals <ul><li>Do you wish to get into a wheel chair like other Parkinsonians?… No! So I set my goals and strive to attain them. </li></ul><ul><ul><li>Build up self confidence in your system and not indulge in self pity </li></ul></ul><ul><ul><li>Understand your body language & accept responsibility for your health </li></ul></ul><ul><ul><li>Manage PD with changes in attitude, diet & exercise </li></ul></ul><ul><ul><li>Stop PD's progress or rather see that it retards & return to normalcy. </li></ul></ul><ul><ul><li>Stop driving and travel by public transport </li></ul></ul>
  19. 25. Accept Nature's Power to Heal <ul><li>Nature is the best healer. Having accepted the responsibility of one's disease and having started on a programme of diet, exercise and life style changes, I also began to listen to my body language and did not rush for medication. </li></ul><ul><li>Any fever or pain or furncles etc., are nature's ways of telling you that something is wrong and correct the situation by changes in diet, exercise and life-style </li></ul><ul><li>Surgery for PD – known as DBS, but that is introduction of implants into the brain. Why not avoid such intrusion? </li></ul>
  20. 26. How do I work towards achieving my goals? <ul><li>While tapering my medications, I gradually increased the time spent on exercise, yoga & pranayam from 30 mins. Today it is hard work but I spend 100 / 120 mins in the mornings on them. </li></ul><ul><li>Want to increase it further and so plan to do it morning & evening </li></ul>
  21. 27. Diet Changes <ul><li>Trying to be a vegan </li></ul><ul><li>Eating plenty of fruits, fresh salads & sprouts. A fruit day once a week </li></ul><ul><li>Stopped eating polished dal </li></ul><ul><li>Stopped artificial stimulants like tea, coffee, colas, sodas etc. </li></ul><ul><li>Avoid milk and milk products </li></ul><ul><li>Reduced food intake </li></ul><ul><li>Generally become a Mitahari and </li></ul><ul><li>Practice Unodari </li></ul>
  22. 28. Exercises, Yoga and Pranayam <ul><li>To combat PD it is essential to exercise all the 600 plus muscles in our body. To achieve this objective I concentrate on each body part and ensure I have exercised it. </li></ul><ul><li>Besides the exercises, I have also increased yogic postures and started learning Pranayam recently. My goal is to spend one hour every day on four basic Pranayams viz., Bhrastika, Kapal Bhati, Anuloma+Viloma and Bhamri </li></ul>
  23. 31. Physiotherapy Group <ul><li>2009 Dallas - joined PD support groups for Occupational therapy, Physiotherapy, Speech therapy and Aquatic therapy. </li></ul><ul><li>Took first hand impression of what is being done and I wanted to implement it for fellow Parkinsonians. </li></ul><ul><li>With sponsorship of RC of B Uptown have started the PT Support Group at Wadala. and thus fellow Parkinsonians also exercise and benefit and reduce dependence on medications and it's side effects. </li></ul><ul><li>Starting speech Therapy at Ali Yavar Jung Inst. </li></ul><ul><li>A story of Sankalpa (Determination), Sangharsh (struggle) & Sadhana (Dedication) </li></ul>
  24. 32. Conclusion <ul><li>Haste Raho </li></ul><ul><li>Hasate Raho </li></ul><ul><li>Has Dalo </li></ul><ul><li>Dil me kuch mat rakho </li></ul>
  25. 33. Thank You <ul><li>Kanu Kamdar </li></ul><ul><li>Member PDMDS </li></ul><ul><li>PRAKRUTI & Save Bombay Committee (Recipients of World Bank award at IDM 2007) </li></ul><ul><li>Garden Group (Matunga) </li></ul><ul><li>Mobile +91 9821999401 </li></ul><ul><li>E-mail kanukamdar@gmail.com </li></ul>

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