New Parkinson disease diagnosis class at Mid Coast

As a part of the Health and Wellness Program at Mid Coast Hospital in Brunswick, a new quarterly, open to the public class titled “Understanding Your Parkinson’s Diagnosis” was launched in October.  The class, which was requested by the the Brunswick PD Support Group, was designed for those with a new PD diagnosis, and featured discussions and question/answer sessions led by Tina Phillips, PT, Grace Plummer, LCSW, Zach Hartman, EP, and Bill Stamey, MD.  The afternoon concluded with a panel of people with PD and a caretaker, who told stories of how they came to be diagnosed, how disease had affected them over the years, and what it like to care for a loved one with PD.  Comments and insights were given by the audience as well.

The next new diagnosis classes will take place on February 20, 2019, and June 19, 2019, 3-5 pm at:

Mid Coast Center for Community Health and Wellness, Parkview Campus Mid Coast-Parkview Hospital, 329 Maine Street, South Entrance Brunswick, Maine 04011

For information on PD classes at Mid Coast Hospital, please visit: http://www.midcoasthealth.com/wellness/classes/ and scroll down to “Parkinson disease,” or call (207) 373-6585.

Donald Harris

Donald Harris, well-known to the Brunswick Parkinson’s community for his quick wit and kindness, has died at age 81 after a brief acute illness.  Over the several years I knew Donald he always impressed me with his integrity, his sense of humor, and his ability to reduce complex discussions into clear choices; though often finishing a thought with an instruction to for me to “think about it.”  Usually the “it” would wind up being something unexpected and funny.  He could also be quite serious and thoughtful.  Donald had a keen mind and a good heart.  He will be missed by many.

Donald’s family is asking that memorial donations be made to the Maine Parkinson Society.   If you would like to do so, donate online by clicking the link here: https://www.maineparkinsonsociety.org/donate/  or, you may click to use the attached donation form by mail: Donation_Form

 

MAINE PARKINSON’S SOCIETY (MEPS) “PASSING THE TORCH”

The Maine Parkinson Society (MEPS) has elected new leadership and MEPS President Gary Cole passed the torch to Karen Marsters of Bangor and a new Society Board of Directors, effective immediately. The newly-elected board members are Karen Marsters, President, Paul Soucy, Vice President, Steph Young, Treasurer/Secretary, Irv Marsters, and Joe Ferris, Esq. The Board is representative of Parkinson patients, caregivers and community leaders.

Click here to learn more, including information about an upcoming PD conference:  Passing the Torch Press Release

PD Programs in Boothbay Harbor and Damariscotta

By Lisa Leighton

I love my work with our community members with PD.  When I work with these folks, I see power, resourcefulness, and resilience.  Thus far, I have had the pleasure of working with patients with varied backgrounds including artists, business men and women, homemakers, social workers, fire fighters, ministers, ship builders, and more.  With each experience I take away something new that I can share with others, be it an alternate technique for putting on a pair of pants or a novel strategy to help gain control over episodes of freezing.  It is their resourcefulness that helps me to stay fresh in continuing to support others in their pursuit of a better quality of life.

I frequently see their power, individually and as a whole, as I watch them take steps to gain control of their health, fight to maintain motivation, and support each other in their quest to find answers and achieve their greatest potential.

I also love the programs and treatments that we can offer to our community members with PD.  This area feels like no other that I have worked in, where there is such great established and emerging research to demonstrate the effectiveness of what we can provide.  I’m glad that we can show people clear numbers to validate their hard work and what it has accomplished in such a short period of time.  Simply, it feels good to be able to provide feedback that reveals to my patients that they do, in fact, have control over their own bodies.

Below, you will find a list of the services that we have for patients with PD on both the Boothbay Harbor and Damariscotta campuses.

Boxing for Parkinson’s [Class is currently 1x/week on Monday at 9 am, but we are looking into adapting to make the time more accessible for more of our community members] – Instructed by Jenifer Wolfe, our Rock Steady Boxing certified PT.

LSVT LOUD – provided by Kristen Dolce, one of our Speech Language Pathologists, at both the St. Andrews and Miles campuses.

LSVT BIG – provided by myself and now with back up from two newly certified clinicians, Courtney Stover and Diane Brown. We are all OTs, and the program is offered at both the St. Andrews and Miles locations.

We have a Theracycle  at the St. Andrews campus

*We are working with the CLC YMCA in Damariscotta to have a Boxing for Parkinson’s Class and a Theracycle available at their site, hopefully starting this Spring –again, it’s a work in progress, so more to come!

We have a year-round Parkinson’s Support Group, held at Chase Point on the Miles Campus in Damariscotta on the 1st Thursday of the month at 2pm- I facilitate this group.

We also host a Parkinson’s Support Group at the St. Andrews Campus during the summer months (June-August)- Kristen Dolce facilitates this group.

Lastly, I am currently working on starting a BIG FOR LIFE- LSVT BIG graduate class which I hope to roll out by or before January.  The class will start out on the St. Andrews Campus, but depending on community interest, I will work to provide it on the Miles campus as well.

Lisa Leighton OTR/L works with Lincoln Health: St. Andrews Campus, Office: 207-633-1894

Boxing is a Big Hit

In the Summer 2016 issue of MPDN we included an article titled Balance in Parkinson Disease (1) which noted that among various interventions, boxing training may be useful in PD.  The article summarized a boxing trial published in the journal NeuroRehabilitation (2) which described patients working with certified trainers at the University of Indiana who focused the participants on a circuit of stretching, punching bags, resistance exercises, and aerobic exercise training.   Before and after completion at many weeks, those involved demonstrated significant improvements in gait velocity, endurance, balance, mobility, and quality of life.  The investigators were building upon an earlier boxing intervention trial published in the journal Physical Therapy (3).  Boxing and exercise at large are part of an ongoing effort over the last few decades to identify physical approaches that will not only improve mobility and dexterity, but decrease fall risk, and possibly slow down disease.  More on various exercise approaches may be found in the Fall 2016 article by Dr. Kleinman (4).

Building in this direction, in 2016 Cate Parker, MS, RN, CEP, Director of Mid Coast Center for Community Health & Wellness, formed a team of specialists and began a series of ongoing exercise programs at the Landing YMCA in Brunswick (5).  There are three classes: a general exercise class for people with PD, a class for graduates of the LSVT program, and Rock Steady Boxing (RSB).  I can say anecdotally that feedback from those taking RSB has been very positive.

Cate Parker is happy these programs are taking off, and would stress that physical activity has many potential benefits in PD, including improved strength, mobility, flexibility and balance.  “To obtain the greatest benefits, patients must commit to daily exercise for life, just like medicine.  Many of our support group participants commented on how difficult it was to exercise on their own or how they were challenged to maintain any improvements they achieved during the LSVT program.  The group asked for help.  As a result we investigated the best exercise options and decided to collaborate with the YMCA to develop a multi-option approach.  Exercise is only helpful if you ‘do it,’ so we decided to provide different options for different people. Our programs include LSVT, dance, yoga and boxing.  Almost any exercise is good medicine for someone with Parkinson’s disease.”

Boxing coaches from right to left are Zach Hartman, Kristy Rose Follmar, and Jennifer Anderson.

RSB trainers Zachary Hartman, EP, and Jennifer Anderson, PT, MPT, flew to Indianapolis to learn the technique and become certified instructors.  In a written response to questions about the programs, they note that “Parkinson’s specific programs at the YMCA Brunswick Landing offer a range of activities for those of all ability levels.  The staff emphasizes safety of each of the participants, while pushing each individual to their intensity threshold in order to help them reach their full potential.  After the Rock Steady Boxing class, participating athletes have reported immediate improvements in symptoms such as bradykinesia, posture, and fine motor skills. One boxer reported that he was able to type for the first time in a few years.  Other boxers have been able to learn to transfer off the floor independently.  A few participants have been quick to report that the high intensity exercise has improved their ability to sleep at night.  Participants not only report improvements in physical strength, balance, and range of motion; but they also appreciate improvements in mental and emotional health. The exercise programs allow for great comradery, and they truly feel like they are members of a team working together in order to improve quality of life. The group members are quick to encourage one another.  Staff members have heard them commenting to each other on the improvements they can see from one week to the next.  Individuals may have good or bad days but as a whole the group is always improving and having fun while doing it.  These exercise groups are intentionally not focused on what the athletes cannot do, but instead on what they can do.  That positive atmosphere is therapeutic in itself.”  Boxing classes for PD take place from 1:30 to 3:30pm, Tuesdays and Thursdays (6).

To learn more about boxing in Brunswick, see the online articles and videos that have been produced lately (7,8,9,10).

footnote:  None of the participants were punched in the making of this article.

REFERENCES (URLs accessed 3/25/17)

  1. http://mainepdnews.org/2016/06/07/balance-in-parkinson-disease/
  2. Combs et al., Community-based group exercise for persons with Parkinson disease: a randomized controlled trial. NeuroRehabilitation. 2013;32(1):117-24.
  3. Combs, et al, Boxing Training for Patients WithParkinson Disease: A Case Series Physical Therapy. 2011;91(1):132-142.
  4. http://mainepdnews.org/2016/09/24/exercise-and-parkinsons-disease/
  5. http://www.midcoasthealth.com/wellness/parkinsons-disease/
  6. https://docs.google.com/viewerng/viewer?url=http://bathymca.org/wordpress/wp-content/uploads/2014/12/Class-schedule-Spring-2017-2.pdf&hl=en_US
  7. http://www.timesrecord.com/news/2016-12-21/Front_Page/Hitting_back_at_Parkinsons.html
  8. http://bangordailynews.com/2017/03/24/next/parkinsons-patients-are-fighting-back-against-the-disease-literally/?goal=0_715eed3192-69816d43f8-82460469 BDN article with video
  9. https://youtu.be/XR5spbBbwao Maine Public video
  10. http://www.sunjournal.com/news/lewiston-auburn/2017/01/14/new-way-battle-parkinsons-boxing/2050682#.WHvsfypcXcU.email  (by subscription)

Portland Area Atypical Parkinson’s Support Group

by Janet Edmunson

Occasionally, someone originally diagnosed with Parkinson’s may later have the diagnosis changed to one of the atypical Parkinsonian disorders.  These include progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) and Lewy Body Dementia (LBD).  While each of these have some movement and non-movement symptoms similar to Parkinson’s disease (PD), they also have other distinctive symptoms that are difficult to manage and deal with for the person affected and the caregiver.  In addition, PSP, CBD and MSA progress much more quickly than PD and LBD. 

Since their needs are unique, Barby Johnson and I started an atypical Parkinson’s support group here in Maine over 10 years ago.  Barby’s husband died of PSP and mine of CBD. 

Our group meets four times a year in Falmouth on Sundays from 1 p.m. to 3 p.m.  During the meeting we usually go around the room and allow every family to discuss what’s been happening since the last meeting and bring up any issues and concerns they are facing.  The group has a positive attitude and addresses issues in a supportive, uplifting way. 

If you are dealing with one of these diseases, we’d love to have you join us.  You can email or call us to get information on the dates of our upcoming meetings as well as directions to our meeting location in the MaineHealth Learning Center at 5 Bucknam Road in Falmouth. 

–Janet Edmunson (207) 799-4963 or janet@janetedmunson.com

–Barby Johnson (207) 633-0881

Camp Lejeune

In January the Public Health website of the U.S. Veterans Affairs (1) reported that “From the 1950s through the 1980s, people living or working at the U.S. Marine Corps Base Camp Lejeune, North Carolina, were potentially exposed to drinking water contaminated with industrial solvents, benzene, and other chemicals.”  The VA has established a presumptive service connection for disability claims of Veterans, Reservists, and National Guard members exposed to contaminants in the water supply at Camp Lejeune from August 1, 1953 through December 31, 1987, if they later developed PD or one of seven malignancies.  The new rule will be in effect March 14, 2017, and is funded by an allocation from the final days of the Obama administration.

This is part of an ongoing story.  Contamination was tragically not detected for decades.  Since the base opened in 1942, up to 30 supply wells were used on the 236 square mile base.  Water from the supply wells was mixed at treatment plants before being used by residents of the base.  Reportedly, tests of sampled Camp Lejeune water from 1980-1985 detected toxic solvents.  Contamination points were identified as a landfill on the base used for chemical dumping, leaks from underground storage tanks, and “waste disposal practices” (2).  The main contaminant in the system was trichloroethylene (TCE) with a maximum detected level of 1,400 µg/L, followed by tetrachloroethylene (PCE) at 100 µg/L, benzene, and breakdown products of TCE: trans-1,2-dichloroethylene (DCE) and vinyl chloride.  U.S. maximum contaminant levels (MCL) for TCE, PCE, and benzene are 5 µg/L. TCE, vinyl chloride and benzene are all classified as a human carcinogens (3,4,5).  PCE is a “likely” or “probable” human carcinogen.  TCE exposure has been identified by multiple authors as a risk factor for PD (6).

The Environmental Protection Agency (EPA) placed the site on the Superfund program’s National Priorities List (NPL) in 1989 because of contaminated groundwater, sediment, soil and surface water.  Next, the EPA, the North Carolina Department of Environment and Natural Resources (NCDENR), and the US Navy investigated the site and “took steps” to clean the base.  For some time since, the wells have been closed.  The problem is not over, and is not small.  Multiple sources cite a Department of Veterans Affairs estimate that up to 900,000 service members might have been exposed to the contaminated water.  It is not clear what number of family members or civilian workers were exposed.  And, diseases such as those reported may be many years in the making before one is even aware they are sick.  However, following discovery of clusters of cancers and other illnesses among those who lived, served, and worked on the base, increasing calls came for investigation.  Grassroots efforts to acknowledge the problem began, multiple legal actions were taken, and political attention was given.  In spite of these efforts, the issue was not as widely known until 2008 when Congress ordered the VA to notify exposed veterans of the problem.  There were, of course, calls to treat those with conditions related to these exposures.

In 2012 the Camp Lejeune Health Care Bill, signed into law by President Obama, covered 15 conditions related to contaminated water exposure, most of them cancers.  The law states “VA provides cost-free health care for certain conditions to Veterans who served at least 30 days of active duty at Camp Lejeune between January 1, 1957 and December 31, 1987.”  Eligible veterans were allowed to enroll in VA health care and receive medical services for covered health conditions at no cost.  Families of vets who lived on the base were included.

This 2017 decision taking effect 3/14/17 is an amendment to the 2012 law and has come after intense scrutiny by several government agencies.

Data collected on those who lived or worked at Camp Lejeune by the Agency for Toxic Substances and Disease Registry (ATSDR) (7) noted that civilian workers would likely have had the highest exposure to toxins in the the water.  A study compared 4,647 Camp Lejeune workers with a similar number from the same time period at Camp Pendleton in California.  These full time civilian employees started working at either base between April 1973 and December 1985.  Researchers carefully screened workers and asked about water consumption and bathing (some showered on the base).  In order to give enough time to detect the slow development of some diseases, they evaluated the health these large cohorts from 1979-2008, noting among multiple other serious health issues, higher rates of PD among the Camp Lejeune civilian workers with higher cumulative exposures to the contaminants.

Federal Register (8) published an online article in January stating this final rule establishes a presumption that Parkinson’s disease, which had originally not been included in the Camp Lejeune Act, is a condition for which there is “strong evidence of a causal relationship and evidence that the condition may be caused by exposure to the contaminants.”  Parkinson’s disease was included as a presumptive cause of disability due to a recommendation made by the Institute of Medicine (IOM), part of the National Academies of Science, in a 2015 report (9).

In Maine there are over 127,000 veterans (10).  At the time of writing this article, I have been unable to determine by online sources or by inquiry to the Department of Veterans Affairs the number of Mainers who served, lived, or worked at Camp Lejeune.

 

REFERENCES

1. http://www.publichealth.va.gov/exposures/camp-lejeune/
2. Bove, et al., Mortality study of civilian employees exposed to contaminated drinking water at USMC Base Camp Lejeune: a retrospective cohort study. 2014;13:68.
3. Environmental Protection Agency (EPA): Final health assessment for TCE. 2011.
4. Guha, et al., Carcinogenicity of trichloroethylene, tetrachloroethylene, some other chlorinated solvents, and their metabolites. Lancet Oncol 2012, 13:1192–1193.
5. Chiu, et al., Human health effects of trichloroethylene: key findings and scientific issues. Environ Health Perspect 2013, 121:303–311.
6. Locke, et al., Solvents and Parkinson disease: a systematic review of toxicological and epidemiological evidence.Toxicol Appl Pharmacol. 2013 Feb 1;266(3):345-55.
7. https://www.atsdr.cdc.gov/sites/lejeune/qa_healthstudyactivities.html
8. https://www.federalregister.gov/documents/2017/01/13/2017-00499/diseases-associated-with-exposure-to-contaminants-in-the-water-supply-at-camp-lejeune
9. https://www.nap.edu/catalog/18991/review-of-va-clinical-guidance-for-the-health-conditions-identified-by-the-camp-lejeune-legislation
10. http://www.maine.gov/veterans/about/media-kit/demographics.html

Stride. Walk. Jog. Run.

by Hunter de Garmo

I am an Husband, Son & soon to be Father (April 4th is coming soon!!!) living in Wiscasset, Maine and I will be running a 50K  (31 miles) on the indoor track at the Boothbay Region YMCA in support of the Maine Parkinson Society.  100% of the proceeds will go to this organization which helps not only my Mom Barbara, but hundreds of Mainers with PD pay for exercise classes, medication and exercise therapy through the Maine Parkinson Society (MEPS) Respite Care program.

STRIDE will take place on Tuesday May 2nd, 2017 and I will be running my ultra distance of 50K from 8am – 4pm while throughout the day participants can make a $10 donation and walk, jog or run ANY distance the choose.  People from all over the State of Maine will be coming back to support and experience this event while enjoying the Food, Music, Vendors & Activities in the Coastal Club Room from 9am – 12 Noon.

The Journey.

Running has been my passion ever since 2009 after over a decade of battling drug & alcohol addiction. Somehow I survived and now I ‘Run For Recovery’ and use the gift of the endurance athlete to inspire ALL to be of service to themselves, their family & their community.  During training for my first marathon I helped to create a 5k Power Run & Walkathon in Stowe, Vermont when I was on the board for the American Parkinson’s Disease Association.  This event is now in it’s 8th year and has GROWN raising over $25,000 for Vermont families statewide. My running journey has lead me to run two 50 Mile Ultramarathons, a 50K for STRIDE and 3 Marathons fundraising for Team Fox & The Micheal J. Fox Foundation.  I was featured in 2013 on their Blog ‘Fox Focus’ as being one of a handful of runners EVER to run an Ultramarathon for the organization.

My long term mission for STRIDE is to give everyone that is involved with Parkinson’s Disease a chance to connect with individuals, businesses and community programs to inspire a healthy lifestyle.   With the growing population of Mainers being diagnosed each year – events like this are going to be pivotal in educating entire generations and inspiring caregivers to reach out and understand there are opportunities and people who care.

Please spend some time on my Instagram @runlivethrive and learn more about my story on the Facebook Event Page and let me know if your organization would be interested in supporting my mission for 2017.

One of my greatest inspirations, Ultra Runner – Dean Karnazes, once said… “Run when you can, walk if you have to, crawl if you must; just never give up.” …this echoes true in both my adventure as an Ultra Endurance Athlete and my Mom’s grace while living with Parkinson’s Disease.


WATCH the BRCTV Channel 7 Documentary on STRIDE 2016 >>> https://vimeo.com/165595939

LEARN more about Hunter de Garmo & STRIDE 2017 >>> Facebook Event Page : https://www.facebook.com/events/181875098965201

Instagram : @runlivethrive

MAKE a Donation to Parkinson’s Disease Research, Awareness & Support in Maine >>> www.maineparkinsonsociety.org

Sponsorship Donations can be made out to ‘Maine Parkinson Society’ and mailed to : Maine Parkinson Society ATTN: Morgan Knox 359 Perry Road Bangor, Maine 04401

In Sickness and In Health

In my exam room there is a piece of writing hanging on the wall which I often find people reading as I enter.  Many feel moved by the words.  Some knew Ken Nye, who put these feelings down for us to read.  In those cases, I am treated to a story about Ken.  They tell me how he helped them, how he was there when needed, how he taught them, how he was just a great guy, or a great friend.  “He cared … he turned my life around … he listened … he was a mentor.”  I have heard so many good things standing there.  These days the stories and comments are always in the past tense, because Ken himself passed in October 2012.

Ken was someone worth knowing.

I met Ken and his wife Ann in 2007 when I first moved to Maine.  They came to my old office in Westbrook for a consultation regarding a diagnosis he had carried since ten years earlier, when he was 55.   I remember that Ken told me he had enjoyed singing with the church choir, and had been having difficulty with his voice.  The falsetto, in particular, was breaking up, and this was not normal for him.  He thought it might be related to aging.  Over the next year, however, his left arm did not swing while walking.   There was a gradually worsening stiffness in his muscles.  When he would extend the arm to reach for something, he felt a ratcheting sensation in the elbow.  He learned he had Parkinson disease and began medications, which did help symptoms, but did not slow the progression.

Ken had been a very active person all of his life and did not want this disease to slow him down.  He was educated, and an educator.  He taught high school in Evanston, Illinois; was department chair of one of their four schools (combined studies department – English and social studies); and became principal of Rumford High School, before taking the same post Yarmouth High School.  During that stint, he was diagnosed with PD.

One of his first concerns with PD was what this would mean for others.  He worried about his wife, Ann, his family, his students.  However, he quickly decided to be open about PD.  He would still go on to become an assistant professor in the graduate program at USM, where he taught teachers who wanted to be principals and athletic directors.  Ken started the advisor/advisee program, independent study, and community service, which many other high schools picked up and still use.  He was a Renaissance man.  For about five years in Yarmouth, he co-taught a senior English class while he was principal.  While he was at USM and after he retired, he gave lectures on poetry at middle and high schools, and gave area schools class sets of some of his books for poetry units.  Student poetry and writing awards at Yarmouth and Freeport High Schools are known as the Ken Nye Awards.

Ken and Ann were very involved in Maine PD community.  They were members of the Young Onset PD Support Group, and initially attended meetings at the Curtis Library in Brunswick.  The group moved to the Nye residence in Freeport for a time, before heading on to South Portland.

Ken’s disease progressed, and he became less able to do some of the things he enjoyed.  He had always been the kind of guy who would climb up on the roof and fix something himself.  Ann and Ken had raised their family on a 20-acre farm in Rumford Center with Black Angus cattle, bees, and gardens.  During the last 30 years of his life, living in Freeport, Ken was just as ambitious.  With PD, he eventually had to find interests that conformed to some of his limitations with balance, and the newest devil to find him, insomnia.  In the sleeplessness of night, he found poetry.  I remember him telling me he attended a weekend meeting and took a chance by sharing his writing with others.  He found that he was able to express himself.  Ann looks back now and tells me that his four books of poetry probably happened because of Parkinson disease.  It was an outlet he could use, and it meant a lot him.  I would say it meant a lot to others too.

Ken also enjoyed casting and painting small figures of soldiers, primarily of the British Empire, but also of the U.S. Civil War.  He had collected similar figures as a boy, and took up creating his own in the mid-1980s after learning the craft from a friend and former professor.  As time went on, he produced these for family, always trying faithfully to define the uniform, the character, the era.  I saw some of the tiny soldiers and was impressed by the skill and patience each had taken.  I was more impressed by the body of knowledge needed to create them.  He loved history, and enjoyed not just the factual side, but reading historical fiction, twice through the 20 novel set of the Aubrey-Maturin series of nautical novels by Patrick O’Brian.   I would often find him in an exam room with book in hand, Ann at his side, her own book open.  The two were a perfect pair.

Ken inspired others.  He was a peer mentor, was active with PD support groups, attended fundraisers, and was involved with planning and coordinating events.  He attended PD exercise classes at Ocean View and supported exercise as an intervention.  Even after he had disease for many years, he built a shed at his home, was the president at his church, and head of the Steeple Committee.  Ken enjoyed sailing and when it became too unsafe, regretted that loss in a rare moment of sadness with his condition.

I think the disease was particularly hard in the last few years, but there were complications from other very serious health concerns.  Falls, spills, injuries, and concurrent illnesses took their toll, and at times Ken was hospitalized or met acutely with the medical profession.  Still, Ken was an inspiration to me.  He took most of this in stride and with dignity.  He laughed once recounting an ER experience for a painful fracture, and truly appreciated those who had cared for him.  This was a recurrent theme.   Many times I have thought about this, and hope I have learned from him something about how to face illness.

I have to give a small confessional as well.  I fumbled about on the day he told he was close to dying.  There were tough decisions, and rather than briefly extend his life with difficult treatments for an illness outside of PD, he had decided to stop and take only comfort measures.  I thought he was feeling desperate, and said so.  I thought he was giving up.  I had it wrong.  With Ann and their daughter Amy at his side, he told me “No, I am not desperate.  I am taking control.”  And he was.

At Ken’s celebration of life a few months later, I was moved again, to hear about the life of Ken Nye from his closest friends and family.  He touched so many, and we all better for it.


In Sickness and In Health

by Ken Nye

– included with permission from Ann Nye

Eleven years ago, when the doctor looked me in the eye and said, “Mr. Nye, you have Parkinson’s disease,” it never occurred to me that the “you” to whom he was speaking included another person who wasn’t even in the room.

But as the years have passed, and this chronic, progressive disease has become more of a nuisance, I have come to understand that “you” meant not me alone, but Ann, too.

There are buttons I cannot button, zippers I can’t get started.  There are organizational tasks I used to do routinely that have now been passed to Ann.  There is medication to be sorted into little square cups of a daily pillbox, ready to be imbibed every three hours through the day so I can function almost normally.  There is a joint pocket calendar maintained by Ann to be sure I get where I am supposed to be, when I am supposed to be there – and she is the driver.   There are foods that I shouldn’t eat, but sometimes do; things I shouldn’t do, but threaten to.  So she watches over me, like a nurse working a 24 hour shift that never ends.

But she never complains.   And when I get angry or frustrated that we have to deal with all of this pain-in-the-neck crap, she brushes it off, cools me down, never offering pity or even sympathy, just acting as if this is all part of life and the promise we made to each other a long time ago.

She meant every word of that “in sickness and in health” stuff 45 years ago.

“Mr. Nye, you and your wife have Parkinson’s disease.”

She never blinked an eyelash.

Am I a lucky man or what?