-1- New England Parkinson s RIDE (NEPR) Sept 10, 2016

Transcription

1 -1- New England Parkinon RIDE (NEPR) Sept 10, 2016 By Lawrence B. Cohen (ee Appendix for Background) Introduction -Sept 10, 2016 Old Orchard Beach, Maine The day dawn gray and overcat with a high humidity that forebode rain much later in the day. But for the 981 rider in attendance lat fall for the New England Parkinon ride (NEPR) the weather i no obtacle. Thoe without the dieae are there to upport and raie money for family and friend with Parkinon. Thoe rider with the dieae, 52 in total, are celebrating their current health and helping to raie money to upport reearch for better treatment and a cure. Organized by the Wood family now in it 9th year thi larget ingle day (Team Fox)fund raier on behalf of the Michael J Fox foundation (MJFF) ha witneed extraordinary growth to what will be cloe to 1,000 rider (981 actual) coming together in common caue to defeat Parkinon Dieae. The rider will on thi ingle day raie ome $711,290 all of which will be donated to MJFF for furthering Parkinon related R&D with the ultimate objective being to find a cure. The event begin with a grand lobter dinner cookout for all participant and family and friend held Friday evening Sept 9, 2016 a the un et on The Ballfield in Old Orchard Beach. A hundred of people of all age come together the air i charged with a palpable optimim and energy purred on by muic, good food, and above all a common uniting caue. Thi i where the event will begin and end on the next day. I am truck by the preence of PD in all of it manifetation for we are varied and unique with each of u tanding at different point along our PD journey. Mot obviou are the commonalitie of tremor amongt u with many having more advanced ymptom where even walking i a labor. Le obviou are the 52 of u who have PD and have the good fortune to not only be here but who are alo able to mount our road bike the morning of Sept 10 and head out on ride of 10, 30,50, and 100 mile. I cannot help but to be reminded of the oft poken adage if you have een one cae of Parkinon then you have een one cae of Parkinon. For thi i a dieae wherein each of u travel a journey which i uniquely our own. There are indeed hared ymptom ranging from the obviou tremor, to balance ( the bane of cyclit), to frozen gait, to lo of mell and tate to diminihed cognitive abilitie, and on and on. But on thi day, at thi place tand 52 oul who differ from the greater PD community becaue they, depite their diagnoi, have the wherewithal to mount thoe bicycle and head out on the highway and byway of the bucolic Maine Countryide, drink in the camaraderie of the greater group, remain upright for hour on the bicycle (with ret top taffed by ome of the mot enthuiatic volunteer anywhere), and return to the ballfield hour later to bak in the glory of accomplihment in helping to lay the Parkinon dragon. Having et the tage for thi inpirational ride we are now able to frame the quetion that i at the core of thi tudy, namely, who are thee 52 who ride thi day? What exitential experience, lifetyle, fortitude, genetic (and

2 -2- good fortune) bring them to the tarting line on thi marvelou September day? What can we learn from thi group which may be more broadly embraced by the PD Community to enhance the live of all patient? Thi et the objective for NEPR Quetionnaire and tudy which now follow. Scope of the Study and Data Gathering From the beginning it wa obviou that I needed the aitance of Cindy Wood Theberge who wa o intrumental in putting thi event together. She become my gateway. She i the only one who poee the ingularly mot critical Data point; pecifically the name and contact information of the 52 who form the backbone of thi tudy. I repect that uch information ha been provided to her with the undertanding that it i highly privileged and will remain confidential. With that in mind I aked Cindy if he would be willing to erve a the conduit though which I could introduce myelf and invite thi elect group to participate in filling out the NEPR Quetionnaire which I had devied with the input/review of other. I propoed that he end my Study participation invitation to each Member of thi group while retaining the addree a confidential. The contactee would then be advied of my addre and aked to confirm through either Cindy or myelf of their willingne to participate and receive a quetionnaire from me. The formal invitation wa ent out on Sept 27 a follow: FIRST INVITATION TO PARTICPATE IN STUDY QUESTIONNAIRE Good morning, You are receiving thi through Cindy Wood at the New England Parkinon Ride. Thi i being done o that you may be aured that any and all information that you provided in regitering for thi ride I held a trictly confidential. My name i Larry Cohen. I am a 68 year old PD patient who wa diagnoed with PD 4.5 year ago. Like you I am omewhat unuual in that depite the PD I rode 50 mile in the 2016 New England Parkinon ride(my third year participating). There were 48 PD patient who rode thi year with a total of 981 rider. A a cientit I am alway intereted in trying to undertand and explain phenomena. In thi cae, what do all of u have in common that allow with PD to uccefully take on thi ride while mot PD patient could not conider it? Are there commonalitie in our repective background that are reponible for thi? Could our undertanding of what enable u to do thi more broadly benefit the greater PD Community? To thi end I eek your interet and willingne to participate in thi tudy which could reult in the publication of a book to help PD patient. Thi book would be offered without charge the objective i only to help. Your participation would be anonymou or dicloed at your pecific requet. In my cae I have been an avid cyclit for 35 year. I pent my life uing cientific tudy to better undertand my world. You repreent a ource of invaluable information without which thi tudy i impoible.

3 -3- You may indicate your willingne to anwer an initial quetionnaire by ing Cindy Wood: NE Parkinon ride OR Larry Cohen Mobile: (not hown here) Thank you for your time and conideration From thi ing 34 of the 52 confirmed their willingne to participate and were ent NEPR quetionnaire (a hown in yellow to ditinguih thi confidential document from all other nonconfidential document in my ytem) on Oct 4-10, From thi quetionnaire ing I then received 28 repone. New England Parkinon Ride Sept 10, 2016 Quetionnaire Name: Age: Education level: Current job: Circle one: Full time or part time Main job during career (if retired): When were you diagnoed? What ymptom led to it? Current ymptom? How have they changed over time? Sleep problem/decribe: What medication are you on for PD? For how long? Doage? When wa it changed? What medication have you been on in the pat? Are you, or have you, participated in a clinical trial? Pleae explain. How would you decribe your diet? What are common thing you eat? Have you alway exercied or wa thi precribed by your PD phyician? What i your exercie regime now? How ha it changed with the diagnoi? What i your perceived level of tre (On a 1-10 cale) Quetion Specific to New England Parkinon' Ride How many year have you participated? What ditance did you ride each year?

4 -4- Wa it any more difficult to complete thi year v. Lat year? What preparation (if any) did you do leading up to the ride? i.e.: Training ride? Ditance per ride? Mile/week How ha your exercie effected your ymptom? Be a detailed a poible Summary of Key Quetion Poed 1. Age 2. Educational background 3. Employment or career 4. Year pot diagnoi 5. Current Symptom 6. Change in Symptom over time 7. Sleep problem 8. Current medication and doage 9. Change in medication 10. Participation in clinical trial 11. Decribe diet 12. Have you alway exercied or MD precribed 13. Exercie regimen 14. Stre Level NEPR Specific quetion 15. Year participating/ditance ridden 16. Preparation for ride 17. Any increae in difficulty now v. pat 18. Ha exercie effected your ymptom? Be detailed Analyi of data Age Wa the ecret behind the 52 (more correctly the 28 reponder) that they were diproportionately young and not repreentative of the general PD community? Thi i definitely not the cae. The age ditribution wa a follow: The median age wa 62 and the average age wa 58.1 (td deviation 7.75). The oldet member wa 71 and the younget 40. So ability to participate wa not kewed toward a younger than normal age ditribution. The explanation wa not to be found here.

5 -5- A G E Y r Age Range of PD Rider participant number Serie1 Year Pot Diagnoi Typically it i reported that diagnoi mot generally occur at 60 (1) year of age. In the 28 we looked at the eential parameter of year pot diagnoi. Year pot diagnoi full group of 28 Average 6.51 Median 6 Std Deviation 4.4

6 -6- Yr Pot Diagnoi v Age y r p o t d i a g n o i Age, yr The average wa 6.51 year with a median of 6 year. So the median participant wa 56 year old (median of 62 minu median pot year diagnoi of 6) at the time of diagnoi. Clearly, thi age i younger than what would be found in the broader PD community. Again it i intructive to digre and focu on the 65+ group who how a median of firt diagnoi of 8 year ago. Year pot diagnoi 65+ group (11) Average 67.2 Median 67 With a median age within thi oldet lice of the tudy at age 67 the median age when firt diagnoed wa 61- very cloe to the general population median of 60. Therefore, the more enior egment of the tudy (age 65+) behaved very much like the broader PD community. Thi would ugget the quet for unique explanatory factor i not to be found a a function of age, year pot diagnoi, or age at time of diagnoi. MEDICATIONS The mot commonly ued medication wa L-DOPA (Sinemet) taken by 17 of the 28 reponder in doage ranging from mg/day mot commonly ued in conjunction with other medication to include: Amantadine: Azilect: cae Ropinerole/Requip: Symmetrel, weak antagonit glutamate receptor, increae dopamine releae Raagiline, monoamine oxidae B inhibitor for early Parkinon or a adjunct in advanced Dopamine agonit (activate dopamine receptor in abence of neurotranmitter dopamine)

7 (Medication continued) -7- Mirapex/Pramipexole: Dopamine agonit Neu-Pro Rotigotine, dopamine agonit Trihexyphenidyl: ued alone or in combination therapy, ymptomatic relief. Often with L-DOPA Entacapone: Dopamine promoter ued with L-DOPA Rytary: L-DOPA extended releae Frequency of ue of other drug by 28 Azilect: 8 Amantadine: 4 Ropinerole: 2 Mirapex: 4 Neu-pro: 2 Trihexyphenidyl: 3 Entacapone: 1 There i no trend or pattern related to the above cited PD medication in the 28. Again amongt the 11 rider at 65+, 8 were taking L-DOPA either alone (3) or in combination with other medication. Current Symptom A broad range of ymptom wa reported with tremor being the mot widely experienced common to 23/28 (82%) rider, and econdarily leep iue (15/28). Additionally the following ymptom were oberved: Contipation (4) Sleeping (15) It hould be noted that leep problem encompaed waking after 3-4 hr. difficulty falling aleep, waking early, acting out dream, and retle leg yndrome Gait (4) Soft voice (3) Balance (3) light Fatigue (2) Stiffne (5) Dytonia (3) Depreion/anx (4) Mot of the common parkinonian ymptom were reported but only tremor (82%) and leep problem (53%) were common to greater than 20% of the total rider. How Would You Decribe Your Diet? Mot rider (17/28) exercied care with what they ate which would typically include fruit, grain, vegetable, poultry and fih with limited or no red meat. There wa a ubgroup of 6/28 who retricted their diet further focuing excluively on fruit, grain, vegetable, poultry and fih with NO red Meat. Two within thi group alo Further retricted diet to gluten free. At the other end of the food pectrum were 5/28 rider who reported a diet with no retriction on type of food conumed. Again there i no apparent correlation of diet with ability to participate a a rider in thi event.

8 -8- Exercie Hitory and Current Level of Exercie It i generally reported that 97% of American over the age of 60 (2) (18/28) do not engage in the minimum recommended amount of exercie of 150 minute per week of moderate activity; for example walking at average peed of 1 mile in 20 minute. The exercie report from the group were mot generally non-quantitative decription that did not lend themelve to tatitical analyi. Thu, for the purpoe of thi paper the following Semi-quantitative cale wa ued for current activity level: No activity 0 Some limited activity 1 ( <150 minute per week of walking or equivalent) Moderate activity 2 (approximately 150 min/ week of walking or equivalent) Above average activity x per week at gym, running, cycling, wimming ( 120 minute or greater) High level of activity x per week running, cycling, wimming at peed (heart rate elevated for Duration Uing the above table the average American adult would be expected to achieve a rating 1 maximum. The group of 28 achieved an average rating of 3.25 with a median rating of 4. In fact 17/28 achieved a rating of 4-5. Thi finding clearly i at pronounced variance from the norm and it mut be concluded that exercie i an eential factor in accounting for the unique overall performance of thi group. Moreover analyi of repone to the quetion Have you alway exercied or wa thi precribed your PD phyician? indicated that 18/28 participant have a long hitory of having exercied regularly. Again thi i at harp variance from the expected norm. How ha exercie effected Your Symptom? It i now time for the individual voice of the participant to be heard. I have anonymouly quoted from their reported repone to thi quetion. (note: comment arranged from oldet to younget) I do believe exercie ha kept me going over many year. Alway feel better after exercie and meditation Exercie clear my head and make me teadier. Tremor go away and balance get better Exercie eem to low down the rate of PD Progreion My voice i louder. Tremor and hand dexterity more manageable. Help me manage tre and depreion. I feel better Participating in the ride with other cyclit ha been empowering Exercie ha helped me rebuild my trength. Ha alo helped with balance iue I am a firm believer in the ue of exercie to delay progreion of PD When I ride Fatigue i high following day but my balance i better. I am more alert Symptom not a noticeable while exerciing

9 -9- Exercie ha been the key to my ability to reaonably low the progreion balance ha tabilized My whole demeanor change when I walk, ride, or do any exercie. My body like me again I leep better and concentration i more precie. I alo feel more relaxed and happier Tremor much better, think more clearly, le rigidity, better mood, and le tre, more relaxed In my body I would be without quetion much wore than I am When I am working out, I do not have Parkinon When I m on my bike I don t have Parkinon Exercie help control tremor, pain and arm and leg wa minimal, reduced tre, gained confidence, uninterrupted leep Pot long bike ride I am eentially ymptom free Finally from the author of thi paper----- If I could only bottle how I feel after a good bike ride I would be ectatic Concluion 1. Age i not a critical factor a 11/28 are 65 year of age and older 2. Year pot diagnoi doe not appear to be a critical factor (mot commonly 5-10 year) 3. Type and doage of medication varie ignificantly (with L-DOPA being mot widely ued) and doe Not appear to be a critical factor 4. Symptom are mot commonly tremor (23/28) and leep iue (15/28) 5. Diet varie widely varying from eat everything to fruit, grain, poultry, fih no red meat 6. Exercie i the key hared characteritic, both currently, and hitorically. Appendix About the author Lawrence B Cohen hold degree in both chemical engineering and organometallic chemitry. He i recognized a an expert in Adheion Promoter, authoring everal chapter on the ubject in variou technical book, holding more than 10 patent, authoring over 20 paper printed in everal language, and erving a the founder and preident (24 year) of Chartwell International, a upplier and developer of unique chemical old around the world. Having old hi company (2014) and retired (2015) he now devote hi full attention to Parkinon Dieae, erving a an ambaador for the Michael J Fox Foundation Trial Finder Program and a conultant to Pfizer on Parkinon related iue. Bibliography (1) Michael J Fox Foundation Webite (2) Palfreman, J, Brain Storm, Scientific American/Farrar, Strau and Giroux, New York, New York, 2015, p.99