Stories

Joe Burger

Strength and Wisdom

Diagnosed at 49

In February of 2007 my wife Debbie and I traveled to Thailand. We knew something was wrong with me before we left. I was 49 years old. A variety of seemingly unrelated symptoms had bothered me for about five years. Like many of us with PD, I bounced through many doctors and tests, looking for an explanation or cause for the symptoms. I received conflicting opinions and no definite diagnosis. Since we couldn't take for granted that I would always be able to travel the way we had in the past, we decided to take one more trip while I was still able.

It was a wonderful trip. I am a scuba diver and the trip included four days on a boat in the Andaman Sea. We saw giant manta rays, eels, and every colorful fish imaginable.

Joe Burger ElephantMy favorite part of the trip was the elephant adventure. We stayed next to an elephant camp in northern Thailand where mahouts cared for and trained elephants every day. We spent a day and learned to ride the elephants and get onto and off of one (harder than you might think!) . We rode them into the Mekong River at bath time and scrubbed them as they rolled over in the water with my wife and I still on their backs.


The Thai people consider elephants good luck and take pride in the role elephants have played in building Thailand. Elephants are a symbol of strength and wisdom. They were used in battle and in construction. In the hands of a skilled mahout they can be fierce or gentle and skilled workers.

When we returned from Thailand I found a motion disorders specialist who gave me a diagnosis of "Parkinson's Disease with 90% certainty." I felt relieved that I wasn't crazy; the fingers in my left hand really didn't work the way they used to. They fumbled when I buttoned my shirt or used the phone. The pain in my shoulder, back and arms was real. My left foot cramped and curled my toes under when I walked, and my left arm hung motionless, as though broken. Now I had an explanation.

I also felt incapacitated. I have always been self sufficient. Could I absorb the news of an incurable and progressive disease? "Who should I tell? Will I be able to keep working and run my business; pay off our mortgage; pay our kids college tuition? Will my wife and I be able to retire?" I considered myself the one that others rely on, not the one who must rely on others.

Many people consider those with Parkinson's Disease disabled. Incorporating "disability" into one's sense of self challenges me. It changes how I understand myself and how others view me. Over the last three years that I gradually reshaped my understanding of disability and how to live with limitations.

DISABILITY is defined as "the condition of being unable to perform as a consequence of physical or mental unfitness"; while ABILITY means "the power or capacity to act or perform". Although I have Parkinson's Disease I now realize my abilities far outnumber my disabilities. Parkinson's Disease is not itself a disability unless I choose to allow it to be.

The other day, I watched the news program 20/20. The episode focused on individuals with uncommon abilities. One man ran 50 marathons, 50 days in a row, in 50 different states. Another man learned Icelandic with only one week of study. He was interviewed on Icelandic national television and amazed the population with his fluency. A third man could sustain extremely cold temperatures that would cause most of our bodies to seize and convulse. He entered freezing water through a port hole in the ice and swam 100 yards under the ice floe to another portal. He emerged in good health ready to test himself in another challenge.

These are extreme examples. There will always be those with more ability in one area or another. However, we have a lot of control when we focus on maintaining or developing our skills and abilities.

Parkinson's Disease taught me to recognize my own considerable abilities. I no longer take them for granted. Where I am challenged, I push back the disease. More than before, I see the world as a place of abundance. Parkinson's taught me to ask for help when needed, and look for tools that enhance my performance. I am better able to recognize when others need help and seek opportunities to support others.

Alexander Graham Bell once said, "When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." Once I decided I was not defeated and not a victim, I have found abundant support from many sources starting with my neurologist and my family. Friends and people who work with me and people in the Parkinson's community I have met through support groups and organizations like PANC have uplifted me. A personal trainer, yoga instructors, masseuses, chiropractor, acupuncturist, physical therapist, have all joined my team and provided incredible support.

There are more resources than ever before to help oneself. Our age of information and technology puts copious amounts of information a few Google clicks away. There are tools that extend one's reach beyond what you could do on your own. For example, I am writing this paper with voice recognition software which works really well (Dragon Naturally Speaking) that a few years ago was not practical due to cost and poor functionality.

The elephant photo gives me perspective on my situation. I like the picture because, although I have Parkinson's Disease, I don't look and didn't feel disabled. After my diagnosis I learned there is always an elephant in the room with Parkinson's Disease. PD is exhausting. I didn't ask for it, it is always there. But with great effort and a commitment to my health, I will continue to ride the elephant and not get stepped on.

6 Comments

You are dealing with PD in a proactive, healthy way, and it is inspiring to me. Thank you for sharing your journey.

Elizabeth, Feb 7, 2011

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Hi Joe! Great story! It's amazing how I related to all of your symptoms- the dysfunction with my hands, the pain in back and arms, the curling cramp of the foot. My EXACT experience as well... When I can relate to someone else's story, it makes me feel better b/c I remember that I am part of a huge team of very strong people. This is exactly why I wrote my story hoping it would help others like your story just helped me. Thank you!!

Krystin Radke, Feb 13, 2011

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I HAVE HAD PD FOR 14 YEARS. I HAVE THE HARDEST TIME WITH MY BALANCE. JUST READING YOUR STORY MAKES ME FEEL BETTER ABOUT ASKING FOR HELP FROM MY FRIENDS AND FAMILY. THANKS!!!!!!!! IHAVE ALSO HAD DBS, IT REALLY HELPED TREMORS AND DYSTONIA.

HELEN, Mar 12, 2011

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Choruję na PD od 6 lat, a od roku choroba nabrała zawrotnego tempa.Ja niestety nie mogę napisać nic optymistycznego.J\
mam 51 lat jestem silna , ( a raczej byłam) psychicznie mam męża i psa i dobrą pracę.Niestety, PD a w szczególności bardzo silne bóle nóg- może ktoś mi odpisze co mam z tym zrobić- załamują mnie.Spadam po równi pochyłej z zawrotnym tempie.Biorę leki co 2,5 godziny, w pracy patrzą na mnie dziwnym wzrokiem ( nie wiedzą o PD) ale muszę ich poinformować we wtorek 7.01.2014 i nie wiem jak to zrobić.Nie mam siły chodzić do pracy codziennie na 8,5 godziny + 1,5 godziny dojazdy.Ale muszę pracować, ponieważ mój mąż nie pracuje, a ja nie mogę go zmusić do tego, żeby pracował.Nie mam odpowiedniego lekarza, nie mam ustawionego leczenia, czarna rozpacz ( HIOB), mój mąż i pies boją się do mnie podejść jak przyjmę za dużą dawkę leków ( zdarza i się to często ze względu na ból nóg, no niech mi ktoś odpisze JAK TAK MOŻNA DALEJ ŻYĆ CODZIENNIE CIERPIĄC CO 2 GODZINY? Mąż się odemnie odsunął (chyba się wstydzi mnie )koleżanki z pracy (nie ma co mówić, też tylko się na mnie patrzą z politowaniem).Dostałam na 2 lata rentę - będzie na opłacenie części leków.Jak zgłosiłam się przed świętami BOżego Narodzenia do Instytucji pomagającej osobą niepełnosprawnym, to dowiedziałam się,że wszystkie projekty z "Unii Europejskiej na rok 2013 zostały zakończone, nie mają mi nic do zaoferowania nawet nie mają dla mnie komputera, bo ostatni został wydany...proszę o kontakt, radę co mam robić?
I do całości dodam, że przydarzła mi się historia:
wychodząc z pracy zapomniałam zabrać leków ze sobą.po drodze jadąc autobusem do domu poczułam,że sztywnieję.przejeżdżaliśmy koło mojej przychodni i apteki. wysiałam z autobusu myśląc ,że w aptece dostanę na przykład rozpuszczalny madopar i wszystko będzie dobrze.niestety pani aptekarka powiedziała,że nie może mi podać żadnego leku neurologicznego, z tym się zgadzam po usilnej mojej prośbie i oświadczeniu ,że zaraz pójdę do przychodni obok po receptę pani aptekarka przyniosła mi opakowanie madoparu i zarządała zapłaty 500,00złotych ( to jest pełnopłtnie) normalnie ten lek kosztuje chyba 3,20złotych.musiałam wyjść bez leku, a w przychodni potraktowani mnie jak pijaczkę, awanturnicę,zostałam upokorzona,w końcu zainteresował się mną przechodzący lekarz akurat neurolog , wypiał mi receptę i poszedł., to nie koniec opowieści , nadal nie miałam leku , płakałam z bólu i upokorzenia, pani pielęgniarka poinformowała mnie ,że na dworzu jest zimno i nie pójdzie wykupić mi lekarstwa, bo się przeziębi.na szczęście przechodziła tamtędy wolontariuszka i zapytała się w czym może mi pomóc.i sama zajęła moją osobą aż do przyjazdu po mnie mojego męża, uff dalej nie piszę

Ela Michalska
ul.Dobra 87 m 26
00-312 Warszawa

Ela Michalska, Jan 4, 2014

I have just had to give up work due to PD. I had DBS 2 years ago without which I believe I would be nonfunctional. It appears to have slowed things down. Fatigue and lack of endurance have taken the ability to work full time. I recognize the dystonia with curling toes and rigidity of the right side and lack of ability to move my right hand. I do hope that diagnosing the disease becomes easier to get. I love your definition of ability.

Helen Cassel, Jul 14, 2012

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Great insights. Thank you. I was just diagnosed this morning but have had systems for six years starting with a twitching thumb and now more of a hand shake and sometimes the shuffling gate. I can control the symptoms at times but when tired they are apparent. It's mild right now and they think it will be slow to progress.

Reading the notes from others is very helpful too.

Thanks. Onward.

Peter, May 16, 2014

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