PD/SentinelCONNECTICUTPARKINSON’S WORKING GROUP

In This IssueThoughts by Dr. Soania Mathur on LivingPositively ............ page 1

Editorial ............... page 2

Letter from the President............................ page 3

I’ve Got Your Back Oris It That You Have MyBack ................... page 4

Scientists Inhibit Rogue Protein ................ page 5

Parkinson’s SupportGroup Alliance isFormed................ page 5

Back to My Future ............................ page 6

The Peripatetic Pursuit of Parkinson Disease............................ page 7

Care Partner Burnout … Don’t Let this Be You!............................ page 7

Calendar ............. page 8

SPRING 2014It ' is what it is”...

without acceptance youcannot move forward.

Optimism is a choice....no one can take that

choice from you.

Abandon fear of the future begin living

your present..

Focus on abilities rather than disabilities.

You cannot remain passive with P.D. You must be active in your own case management.

Stay engaged.

Thoughts on Living

Positively

Thoughts by Dr. Soania Mathuron Living

Positively

Dr. Soania Mathur was a Family Practice physi-cian practicing outside of Toronto when she wasdiagnosed with Young Onset Parkinson's Diseaseat the age of 27. She has since become involvedwith Parkinson's Disease of Canada and theMichael J. Fox Foundation. She is a frequent pub-lic speaker and Parkinson's Advocate. She hasthree books on discussing PD with children. She ad-dressed the 3rd World Parkinson Congress in Mon-treal this October 2013.

ATTENTION!This may be your last issue

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EditorialSOMETHING INSIDE SO STRONG....The 3rd World Parkinson's Congress in Montreal had acontest through the year leading up to the event. It was avideo contest. The topic was how PD has influenced you.113 videos were submitted by PWPs all over the world.

I shared the Grand Prize winners video of “Smaller,” apoem designed by a father to explain PD To his youngdaughters, and 2nd prize winner the Voices of HopeChoir from Ireland with their rendition of “SomethingInside so Strong” as part of my take-home treasures.For your pleasure you may find these by going tohttp://www.worldpdcongress.org/?page=Top12Video. Itmust have been hard to choose the winners, but“Smaller won both people's choice and critic's choice,and my choice also. Take a look ... I know that I canmake it......

.

GrumpyI become a grumpwhen I think about my humpDoc sent me to P.T.Where they tried to straighten me.It did not work a bit,I will have to live with it.

Oh I become a grump ,when I think about my hump.It makes me feel not me,and I know that others see.

My folks said don't slumpI minded them obediently.But then PD took overand made a lumpy grump of me.

By Kendra Hough, R.N.

.

DEVELOPING ANALPHA-SYNUCLEINTHERAPY “ A vaccine approach toward targeting alpha-synucleinin PD is now in the clinic. The vaccine candidate fromAustraliaBiotech AFFIRIS works by binding to alpha-synuclein, subsequently closing it off from the brain. Itis in the 1st stages of clinical trialing.

Other approved compounds that have been seen to stopand slow synuclein clumping and to break up existingclumps are moving forward in pre-clinical trials. As of1/12 MJF Foundation has donated $47 million dollarstowards projects targeting alpha-synuclein".

CHASING THE ELUSIVEINKLE!Of course it does not matter. There is no way of knowingwhat was first. It doesn't matter anyway. So why botherchasing the Inkle? Because it is puzzling. It makes a hoaxof the order of things. It denies one control of ones self.It challenges you to reflect on the sequence of your life.So what came first....the leg cramps or slow walking?

Or frozen shoulder?Or micrographia?Or tremor?Or loss of smell?How about loss of armswing?They say constipation precedes diagnosis by 20 years. A subtle difficulty with sequential procedures?Loss of a word....or a name stuck on the tip of your tongue?That time you did not reach the toilet in time?Lowering of your voice tone...of which you were totally unaware?Noticing that you no longer could do something that was routine?

Those you note are pondered. The un-noted, and un-recognized are not in the count. Maybe they are the first.invisible, disregarded and unaccounted for in innocenceof their presence.....lurking.....leaving you un-aware ….you haven't an inkle!

If you wish to receive email notification of meetings, cancellations and other events send

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To offset the increasingly high printer and mailing costs we need to eliminate all those who no

longer wish to receive the newsletter. Please call 860-346-2212 or email jeff.lagrange@cpwg.org

and let us know you want it to continue. If we don't hear from you by June 1st

we will eliminate your name. Thank you.

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Putting ItAll Together –A Winning Team

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For those of you who don’t know me let me say hello. Myname is Jeffrey LaGrange and I have Parkinson’s. A little overten years ago I went to Yale to find out why my right pinkiefinger was moving all so little but noticeable by me. Afterwell over an hour and two neurologists I found out I haveParkinson’s.

I probably should admit at first I panicked. The end was near.But it wasn’t. After ten years I’m still here and fighting like aprizefighter everyday. This will not win – it hit the wrong guyif you expect me to declare defeat. I learned much of thatfrom my Mom who at the age of 67 was told she had ALS oras most of you probably know it Lou Gehrig’s disease.Parkinson’s on speed. She was given two years and that’sabout all she had. Not to dwell on this but it was my motherwho taught me much of what I do and how I act today. Shewas gracious and loving up until the end. She accepted herdisease and hardly ever complained. I am still impressed.

Which brings me back to today. I was elected to the post ofpresident late last year after serving as vice president for ayear. So it wasn’t a big jump. After being voted in I got rightto work for everyone who has and does and will attend ourmeetings. Make every meeting count and make every meetingspecial.

Surround yourself with the best – that is the best board mem-ber and if necessary find the best if they are not active. Done!Also get the best you can in the world of guest speakers.They’re out there and sometimes all it takes is asking them tocome and talk and share their knowledge and they do. Simi-lar to the line from the movie “Field of Dreams” – ask themand they will come.

So I ask and knowing I can’t do this by myself get JillBaldwin to head up our new Public Relations departmentand as it turns out Jill is a dynamo at getting speakers andgetting our message out there. If you want proof ask herabout being on the morning news last year with ourParkinson’s dance teacher.

Then before I could blink Buzz Baldwin, a man who is nostranger to bookkeeping and ledger sheets became ournew Treasurer, replacing the irreplaceable Steve Halloranand gave Steve the key to retirement which he was happyto receive.

Add the writing excellence of Kendra Hough as thenewsletters editor and Jean LaGrange as the creativedirector. Be certain that they are on the board and letthem do what they do so well. Have you seen the newslet-ter lately? Beyond compare. So let’s keep going.

Check that Lisa Burtt is comfortable with being thesecretary as well as newsletter assistant and about a dozenother jobs she has been doing,

Make sure Dave Curtin explains to you how he goes aboutdoing magic on our website and is also comfortable withhis tasks.

Then you’ve got Tess Deshefy-Longhi as the medicaladvisor –you could hardly get anyone better and moreknowledgeable.

Ask that Jackie Dorwin, one of the founding drivingforces of CPWG doesn’t go too far away so make her anambassador.

So there you have a little bit about me and the board of directors. As I surround myself with the best you can’t lose. I knowCPWG is all the better for it.

Letter from the President

Jeffrey LaGrange

Scientists Inhibit Rogue Protein

Would you recognize a picture of your own back? PD Our re-lentless pursuer makes you look different from the front...maskedface, loss of expression, still arm, etc........but it also changes yourbackside...where you cannot see....but you know about it.....howit looks, what it does and how it feels. Just as many of us havestarted our trip with decreased arm swing and frozen shoulderissues, many of us will recognize what is happening but not knowthat it is part of the PD inventory! Like we have heard over andover the etiology is not entirely known......What I am referring tois camptocormia and scoliosis.....partners in the crime. Theaccompanying marauders are antecollis and pisa syndrome.

Has one shoulder been swinging forward? Is a prominence ofone shoulder blade occurring? Do you have a crease across yourbelly that you never had before? Are you walking slouched? Areyou unable to stand straight if you want to, but if reminded canmake a temporary effort? Does your back return to normalcywhen you are supine? Camptocormia is defined as extremeforward flexion of the spine....sometimes to 45 degrees.it can bepainful standing,sitting, walking.

Camptocormia was one topic discussed at the World ParkinsonConference in Montreal. It is a funny sounding word thatreminds me of cornucopia, but the bounty that it brings isunwelcome at my table. The word comes from Greek, meaningbent trunk.....An early use of the word was in reference to theposture of soldiers in the World Wars hunching over so they hadless chance of being shot, and was thought to be also involved asa hysterical symptom in post-traumatic stress disorder. It is pres-ent in other diseases than P.D. And in P.D. The onset is aboutseven years from diagnosis.

The two theories that seem to be prevalent are that theetiologyis brain related or muscular. The para-spinous muscles have beenstudied for mycosterology but experimental results have not beendefinitive although study presented at 3rd World Conferenceseemed to support the latter.

Aside from altered appearance, camptocormia as mentioned canbring pain, but it can also alter one's visual perspective as well ascontribute to breathlessness. It can occur rather suddenly, it isnot a condition that has had copious attention.

While some efforts seem to have been made in treating this some-times disabling condition, a specific treatment has not been

found totally effective. While there is general consensus thatCamptocormia is not L-dopa responsive it has been seen thatDBS can be helpful, yet runs the risk of precipitating other pos-tural disorders. Physical approaches...hydrotherapy, braces andsimilar efforts at correction are not effective. Surgery has not beenhelpful. One article has made mention of one instance of patientreceiving relief from wearing a low slung backpack. I have triedthis with a lead weight from the scuba shack.....the jury is out.

Scoliosis provides further insult. When a carepartner seated infront of me verbalized her concern regarding the appearance ofa lumping of the shoulder blade area of her husband, my inter-est was raised. I thought, that sounds like me. With the risk ofbeing seen coming out of a public bathroom with camera inhand, I had a friend take a picture of my back (cannot take a pic-ture of my own back).....and lo and behold......my back iscrooked. A colleague had noted that one of my hips was higherthan the other....i noticed pain under the ribs and the loss of a de-fined waist on one side (i have a waist on the other side).....I won-dered what weird thing was happening to my waist....its folds areasymmetrical. I found shortly thereafter that there is a high inci-dence of scoliosis with PD. The incidence is higher in women andit increases with age.

Scoliosis is defined as lateral curvature of the spine with vertebralrotation. leading to asymmetric deformity of the trunk. It doesnot correlate with hand dominance or side of PD signs. Pathol-ogy is unclear with some support of those paraspinous musclesbeing involved again. Treatment, as we would suspect, has beenvaried, with some emphasis on bracing but without good com-pliance.

Antecollis, also known as dropped head syndrome is often foundwith camptocormia. Most prominent in women, it varies in onsetin relation to diagnosis. It also, is not amenable to treatment,although muscle relaxants, botulin toxin, physiotherapy andsometimes PD drugs bring some relief. Interferes with eye to eyecontact and limits range of motion. Origin can sometimes bedrugs including Mirapex or Amantadine.

Pisa syndrome is a lateral leaning to one side at the trunk. It in-creases while walking and resolves temporarily when supine. Itis often not observed at onset but gradually can produce markeddeformity, pain, imbalance, and difficulty breathing. As with theabove etiology and effective treatment are elusive.

Do you recognize yourself in this horn of plenty?Page 4

I've Got Your Back —Or Is It That You Have My BacK?

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Researchers at Rensselaer Polytechnic Institute have devel-oped a new method to design antibodies aimed at combatingdisease. The process was used to make antibodies that neu-tralize the harmful protein particles that lead to Alzheimer'sdisease. Relationship is suspected to be similar in PD.

Excerpt from Body Mind Connection, credited to NSF andKarson Productions further explains this new development.Material used is in Public Domain being used for educationalpurposes.

Some of the best ways of fighting disease come from our bod-ies themselves. So it's no surprise that a new method to com-bat conditions like Alzheimer's and Parkinson's could comefrom the body's own defense arsenal--with a little help fromscientists at Rensselaer Polytechnic Institute. They've devel-oped a way to design antibodies that specifically target harm-ful proteins like the ones that lead to Alzheimer's.

This is an antibody. Y-shaped, with a bunch of peptide loopshanging off of it. When the antibody targets an invader itsloops bind to it and neutralize the unwelcome guest. But the

antibodies have to have just the right arrangement of loops inorder to bind to a specific invader. With billions of combina-tions possible, scientists have been unable to design antibod-ies to combat specific ailments. The new method may helpchange that by using the same molecular interactions thatcause the Alzheimer's proteins to stick together.

In tests, the group found that their newly-created antibodieslatched on to only the harmful clumped proteins associatedwith the disease, while leaving the other harmless proteins un-touched. The researchers see potential for the technique beingused to target protein particles involved in Parkinson's dis-ease as well.

Just goes to show what the body can do once we put ourminds to it.

"The discovery files" covers projects funded by the govern-ment's national science foundation. Federally sponsored re-search--brought to you, by you! Learn more at nsf.gov or onour podcast.

Scientists Inhibit Rogue Protein

At the January 2014 CPWG meeting, it was announced thattwo other independent support groups in Connecticut andCPWG have formed an Alliance. Recognizing that there isstrength in numbers, CPWG has joined forces with the Con-necticut Advocates for Parkinson’s (in Southbury and Glas-tonbury) and the Torrington Area Parkinson’s SupportGroup to form the Make a Difference Parkinson’s Alliance.

One of the key goals of this collaboration is to play an activerole in pursuing better treatments for people with Parkinson’s(PwP). The Alliance believes that a unified voice can expressa stronger need to those responsible for improving thequality of lives for PwP. In other words, a voice representinghundreds of PwP approaching researchers, pharmaceuticalcompanies and clinicians, will have a better chance of speed-ing improved symptomatic treatments and bring us closer toa cure.

The Make a Difference Parkinson’s Alliance does not changethe mission or programs of CPWG, nor the other groups. AnAlliance website is being developed that will include a link tothe individual website of each support group. By sharing up-coming events of each group, the website will allow members

of all the support groups to attend activities and programs ofinterest. It will also contain valuable information aboutclinical trials being held in Connecticut and nearby states.

The Alliance recognizes the following principles to be true:• We believe much can be accomplished through

collaboration.

• We believe we have the responsibility to play an active role in the pursuit of improved treatments.

• We believe we are stronger using a unified voice to express our needs to those acting on matters that affect the progress of improving our lives with Parkinson’s.

CPWG President Jeff LaGrange said “CPWG is pleased tobe part of this Alliance. We believe we can make a greater im-pact fighting Parkinson’s and giving those dealing with ithope for the future through a unified group.”

The Alliance is planning to hold its first informational andsocial event this summer – watch for details. For questionsabout the Alliance, please contact Judy Iovanna (judy.io-vanna@cpwg.org), Jill Baldwin (jill.baldwin@cpwg.org) orBuzz Baldwin (buzz.baldwin@cpwg.org).

By BuzzBaldwin

Parkinson’s Support Group Alliance is Formed

wild ride with me riding shotgun, except this time in a Subaruwagon! Parkinson’s will not win.

Everyone living with Parkinson’s disease has a story to tell de-scribing how the ambiguous changes taking charge of theirbody emerged. Although these stories share common threads,such as rigidity, tremor and impaired movement, the symp-toms vary and produce unique chronicles. Parkinson’s ac-counts are similar to the popular children’s book genre, theChoose Your Own Adventure series, which allows the readerto select from a variety of endings, creating multiple versionsof the same book.

Before my retirement I worked in education. My first experi-ence was with middle school students, the age group mostadults avoid like the plague. But, I loved the enthusiasm ofthose preteens as they experienced the wonder years. Aftertime spent in the hormonal holding pen, I moved to a localuniversity; honestly, it was not as exciting working with grad-uate students. The final days of my career were spent withpreschoolers. Here, I hit pay dirt. You just can’t have a badday with three and four year olds!

Eventually my symptoms progressed and impacted how I per-formed the most basic of everyday tasks. I noticed that I hadbegun to acquire numerous characteristics of the little tykesattending the preschool where I worked. As Parkinson’sleisurely made itself at home in my body, it kidnapped my finemotor skills, transporting me back in time to those fumblingearly childhood days. Was I becoming a case of disease imi-tating life as a child?

Have you ever observed three year olds go about their daily ac-tivities? They are fascinated with everything and exuberantabout learning new life skills. It doesn’t matter to them if theshoelaces they tied are too loose or for that matter, tied at all.Future fashionistas wobble on plastic high heels as they at-tempt to walk, clip-clopping around the classroom during dra-matic play time. Preschoolers are universally taught to washtheir hands to songs like “Happy Birthday to You,” latheringand scrubbing for at least 20 seconds, thus ensuring that thegerms are washed away. Yet if you watch carefully, you willnotice the liquid soap is immediately rinsed off a child’s hands

Back to MyFuture

before any hand rubbing takes place. This is generlly followedby grabbing a paper towel, pressing it up to the hands, tossingthe towel into a garbage pail (usually missing it) and walkingback to the classroom with sopping wet hands. Watching agroup of tots getting ready for playground time is always en-tertaining. Young children have such unique ways of puttingon coats and sweaters. Their arms become entrapped in thesleeves and they often misalign the buttons. Preschool young-sters are very proud of their artwork and are eager to learn toprint their names on the masterpieces they produce. The typ-ical signature of these junior Jackson Pollocks usually startsout LARGE and ends tiny. And of course a little one alwaysneeds to hold someone’s hand when walking, especially incrowds.

My love of shoes has been pilfered by Parkinson’s, disruptingmy dramatic play time. So many high heels in my closet arewaiting to be worn, but I am unable to balance in them whilestanding, let alone walking. Sensible sneakers also present achallenge for me. Pushing my feet into these walking shoestakes so much extra oomph and tying the laces is a cumber-some process. Hand washing has become difficult and I fre-quently find myself standing in amazement and ponderingwhy my hands are still wet, even after towel drying. Many ar-ticles of clothing are impossible for me to don without assis-tance from my husband, or my “lady’s maid” as I now refer tohim. Our grocery shopping excursions could be mistaken fora culinary reality show, starring the two of us trying to deci-pher my illegible, miniscule handwriting while hopefully pur-chasing the correct ingredients for each episode’s entre.Handholding is now essential in congested areas and, as al-ways, it’s still very romantic when my husband reaches out toprotect me.

Preschoolers look at the challenge of achieving a new skillwith excitement and marvel. They are so proud of their ac-complishment when a task has been mastered. AlthoughParkinson’s has altered the way I execute many daily activi-ties, I am moving forward meeting these obstacles head-on. Irefuse to allow my future to slip back in time. I will prevailand see wonder in the process by channeling my inner pre-schooler and not crying over spilt milk (literally, I spill thingsoften). My personal choose your own adventure book aboutParkinson’s will have unlimited happy endings, keeping me astep ahead and in control of Parkinson’s!

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My Parkinson’s Journey

By Jill R. J.Baldwin

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The Healing Presence

The Peripatetic Pursuit of Parkinson Disease, writtenby the Parkinsons Creative Collective, made its debut atthe October 2013 World Parkinson Congress. Thisunique book about Parkinson’s disease was written bypeople with Parkinson’s disease, who were united bythe online community for neurological diseases calledNeuroTalk. This book is not for the faint of heart,these citizen scientists tell it like it is. But that is exactlywhy it is a must read for anyone touched by Parkinson’sdisease, whether a patient, care-partner, family mem-ber or medical professional. In a perfect world, whena doctor delivers the unfathomable diagnosis, “I believeyou have Parkinson’s disease,” this book should behanded to the patient.

It is a visually beautiful and inviting book addressingall things Parkinson’s: individual stories, symptoms,treatments, exercises, research, clinical trials, advocacy,and a host of other indispensable topics. The thoughtsand feelings the writers eloquently share about theirdisease help validate our own sentiments. The layout isuser friendly, you can open to any page and begin read-ing. The Peripatetic Pursuit of Parkinson Disease em-powers and encourages people at all stages ofParkinson’s to become participatory patients as theywalk along their journey. The Peripatetic Pursuit ofParkinson Disease can be purchased through theParkinsons Creative Collective http://www.parkinson-screativecollective.org/ or Amazon http://www.ama-zon.com/.

By Jill R. J.Baldwin

Dealing with Care Partner Stress….

• Ask for help–Speak up, spread theresponsibility, relinquish some control

• Give yourself a break – set aside 30 minutes a day for yourself, get out of the house

• Practice acceptance – focus on things you can control, share your feelings

• Take care of your health – exercise, meditate, eat well, rest

• Join a support group – join either a local or online support group, connect with others

For additional information on Care Partner supportresources, please access the following web sites:

http://www.helpguide.org/elder/caregiver_stress_burnout.htm

http://carepartnersresource.com

http://www.caregiving.org/resources/caregiver-resources

By Lisa Burtt

BOOK REVIEW

The PeripateticPursuit of Parkinson Disease

Care PartnerBurnout …Don’t let this be you!The demands of caregiving canbe overwhelming, especially ifyou feel you have little controlover the situation or you’re inover your head. If the stress ofcaregiving is left unchecked, it can take a toll on yourhealth, relationships, and state of mind – eventuallyleading to burnout. That’s why making time to rest,relax, and recharge isn’t luxury-it’s a necessity!

52 Princeton DriveMiddletown, CT 06457

Disclaimer: The content of this newsletter is offered to our readers solely onan informational basis and is not intended to support any medical treatment oradvice. You are encouraged to review information regarding treatment with yourphysician. The opinions expressed are those of the writer or presenter and do notconstitute an endorsement or approval by the CPWG Board or Newsletter staff.

CalendarCPWG Activities:Regular 3rd-Saturday-of-the-Month Meetings,10:00 a.m.-Noon. Middlesex Hospital, Middletown, CT.Visit us at www.facebook.com/CPWG.org and www.cpwg.org

September 21 — TBDEventsWorld Parkinson Congress—Montreal, CanadaTuesday-Friday October 1-4, 2013 For more informationemail www.worldpdcongress.org

IND searching for non-PWP's over 60 with impaired smell Ongoing See next newsletter for more information

CONNECTICUTPARKINSON’S WORKING GROUP

CPWG Activities:Regular 3rd-Saturday-of-the-Month Meetings,10:00 a.m.-Noon. Middlesex Hospital, Middletown, CT.

February 16—Program to be determined.

March 16—Program to be determined

ConnecticutParkinson’s

Working Group

Visit CPWG on facebook!

Dance with Parkinson’sMondays 10:45-noon sponsored by Rehab Concepts-at VNA Community Healthcare, 753 Boston PostRd, Guilford 203-458-4351

Dancing for JoyMondays 1:30-2:45 Middletown Senior Center,William St. Middletown 203-675-2930Tuesdays 1:30-2:45 First Presbyterian Church,1704 Whitney Ave., New Haven 203-675-2930

Wednesday 10:30-11:45 Connecticut College, NewLondon 2nd floor Crozier Hall 401-261-7062

Therapeutic Seated Exercise ClassMonday and Friday 10:30-11:30 Waterford Cross-roads Atria, enter through BACK DOOR $40 &MED NOTE. 860-710-6866

Disclaimer: The content of this newsletter is offered to our readers solely onan informational basis and is not intended to support any medical treatment oradvice. You are encouraged to review information regarding treatment with yourphysician. The opinions expressed are those of the writer or presenter and do notconstitute an endorsement or approval by the CPWG Board or Newsletter staff.

CalendarCPWG Activities:Regular 3rd-Saturday-of-the-Month Meetings,10:00 a.m.-Noon. Middlesex Hospital, Middletown, CT.Visit us at www.facebook.com/CPWG.org and www.cpwg.org

May 17 – Speaker, Dr. Adam Simmons, Hospital forSpecial Care, Parkinson's Disease & Movement Center

The board election process will take place at a board meeting immediately following this meeting. Anyone who wants to attend s welcome.

June 21 – Speaker, Tracey Godwin-Randolph, Therapeutic seated Parkinson's exercise class.

EventsThe Summer Parkinson's Symposium Saturday, July 12, 2014 9 a.m. to 4:30 p.m. at theUniversity of Hartford. A free event and luncheonsponsored by Medtronic and presented by MADPA – theMake a Difference Parkinson's Alliance

ATTENTION!This may be your last issue

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