Stories

John Carlin's Story1

Empowerment Through Adventure

Diagnosed at 44

I walked out of the doctor’s office after a 7 minute exam with “you have Parkinson’s Disease, here’s some meds, brochure, call me with questions and we’ll see you in 6 months” still ringing in my ears. We call him, Dr. #1. Stunned and not quite understanding the big picture yet, nor its implications, I cratered. It all began when I noticed that my fine motor skills, brushing my teeth, shaving, rolling up a blue print were not working very well. My right hand pinky had a discernible tremor and my wife had noticed an expressionless pawl on my usually smiling Irish face. After going to a motion disorder neurologist (Dr. #2) for confirmation, we started researching everything that we could find about PD. With in a matter of days my wife, Martha, had a 3 ft pile of articles on each corner of my desk. One of Martha’s incredible qualities is her tenacious capability of attacking a situation head on, weed through it all and produce results. Upon being given the diagnosis your brain goes into overdrive, dwelling on your PD 24/7. It is awful. You are constantly thinking about what is going to happen, how bad it is going to be, how long will I live, will I look like him or her etc., etc. You tear yourself up for what seems eons. Mental gyrations the likes of which you have never seen before nor care to explore - surface. The unknown is what gets you in trouble. I like to call PD the “Designer Disease”.

PD manifests itself with different symptoms for everyone. Mine was a slight tremor in my right pinky, fine motor skills dissipating, and my voice started to grow softer. I am now a 9- year veteran. Eventually I took on the Beast by putting him in the corner of the room and mentally shrinking him down from the size of a jumbo elephant to the size of a field mouse. When I have a challenging day it means the Elephant has passed gas. It is my job to dissipate the gas. By doing so I control the Beast rearing its ugly head. I have taken back control of my life and have come back from the abyss. The place where everyone goes when diagnosed with an incurable disease. As I like to say you go to the window ledge and you decide to either jump or come back in and fight. One of the big things missing was my sense of humor. It had checked out. As those that know me I am always joking. As I realized I needed to get a new mind set, I turned back to humor to help pave the way. I made a point of listening to XM radio daily because it has a smorgasbord of stations devoted to comedy. I believe that we aren’t given more than we can handle. If I can help folks to stand up taller and feel the sun on their face then we all see the sun a little bit warmer and closer every time. People who believe in themselves start getting a better outlook on life, are more positive, and believe in themselves. Don’t let yourself become a victim to the Beast. Many have thrown in the towel or never had a towel to throw in, which is even worse. Hope is key. If I could do one thing that is to spread a little hope around and get people to believe in themselves and that they can change their outlook. Then we have beaten the Beast for another day.

I finally pulled myself together after discovering that I am what defines me not the PD. You come to an epiphany and you either continue on a path that gradually overwhelms you or you do something about it. So I started finding different therapies that could help me wrestle the Elephant. In my quest to reinvent myself I didn’t limit myself to just Western medicine and the “approved” forms of help. I started looking into the alternative therapies and stumbled upon an exercise program that was discovered while riding across Iowa. Dr. Jay Alberts of the Cleveland Clinic had just released his results of a forced exercise study that was on a stationary tandem. The PD symptoms were reduced by 35%. Since I was a road biker, I contacted Dr. Alberts and I was off to ride myself out of the abyss. By this time I had gotten a hold of my mental degradation and actually reformed my internal sliding and got a better and brighter outlook on my life. I came to realize that you can actually be in control of the Elephant. My physical and mental well being had improved so much from the biking program and other therapies that I decided to join Dr. Albert’s biking group called “Pedaling For Parkinsons” which rides across Iowa every summer in the RAGBRAI to bring awareness to PD. The irony about the Pedaling For Parkinson's program is that you lose weight and get in shape. Physically and mentally I was doing well. Things were improving all across the board.

John Carlin's Story2Towards the end of last year we got a call from a good friend in Seattle who has PD herself. A group of MS folks were going to climb Mt. Kilimanjaro in Tanzania and a PD neurologist friend had gotten some spaces for some PD’s. They were all going, would we be interested? This was huge! The group was up for a large challenge with no guarantees. It would be the trip of a lifetime. Climbing Mt. Kilimanjaro all 19,340 ft or 5895 in metric. The trip was called “Empowerment Through Adventure” led by a Wisconsin woman who has MS herself. She assembled the group of 28, MS/PD folks and their healthy companion climbers. This group defied the skeptics and the naysayers. We all flew to Tanzania (go to the equator, east side of Africa, find Lake Victoria and just SE of there is Mt. Kilimanjaro). We started at roughly 6,000 ft. eventually camping below summit at 15,500 ft. By the 6th day of hiking in part to get acclimatized, we reached the summit, the worlds tallest, stand alone mountain, one of the 7 summits. Summiting Mt. Kilimanjaro (19,340 ft.) has been quite an adventure. We challenged ourselves physically and you too can conquer your own Kilimanjaro.

20 Comments

I have a friend Michael who has the disease for several years now. He is now 58 and has a full time job. He also takes care of his 86 yr. old mother who is blind and unable to move due to a stroke. He has to hoist her to her bed. On the weekend he cleans and goes food shopping. He has nobody to take care of his mother. She stays alone in the apartment while he is at work. He says he is old and does not have a life and will not go with his friends because he can't drink and will not go on vacation because it takes him time to get together and he has to take his medication with him. I identify with him I have multiple medical conditions and take care of my 83 year old mother who cannot walk. Do you have any suggestions for my friend Michael? His e-mail is mjmay3@verizon.net. My 3-mail is ms24ep@yahoo.com All the best to you and your wife.

Paulette

Paulette Davis, Dec 24, 2011

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Good morning, I'm 49 years old had Parkinson's for nine years I've yet to get involved or meet anyone else with Parkinson's I stumbled across your story this morning I was wondering how I could find out about any groups in Seattle. I enjoyed reading your article because I believe it to be true keeping positive and active is the first key to fighting Parkinson's and excepting the challenge.

Bruce Grajczyk, Dec 28, 2011

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Mark Nelson, Physical Therapist at NWH. He is at mark.nelson@nwhsea.org

northwest hospital in seattle is continuing a biking study started last year that was very exciting and successful. different backers this time. i am told this man mark nelson will be able to give you more information. bruce. good luck!

w hussey, Dec 28, 2011

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2003 WAS MY DATE OFFINDING OUT ABOUT MY PD VERY AFRAID OFMY FUTURE, ONLY 59 YRS. OLD

RICHARD W DELANEY, Dec 28, 2011

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Thanks for the optimism and hope!

Liz, Dec 28, 2011

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I was officially diagnosed with PD at the age of 44 also! I'm now 57 and keeping on keeping on . . . . I began noticing symptoms at least 5-6 years before that. I was living in Anchorage, AK, was teaching 5th graders (and loving it), teaching part time for the University (had plans to get my doctorate) and heavily involved with a very successful mentoring program in conjunction with our district, Life was good. I had finally found a wonderful new guy and life couldn't have been better. . . then the tingling in my right hand little finger and after 5 years of searching doctor after doctor, a friend suggested I might have PD as the symptoms were similar to his mother's who had PD. I found the ONE doctor in Anchorage who knew about PD and, like Mark, was diagnosed in about 5 minutes. I was devastated to find out what I had! I had to retire and moved out of state to Montana. To help myself, as well as others, I started a support group and am keeping as fit as I can be. It is a life saver for me and many others. THanks for sharing and giving me the opportunity to share my story. Please feel free to contact me and share or ask whatever. It is comforting (in a weird sort of way) to share with other PDers and especially young onset folks.

Susan Johnson, Dec 29, 2011

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your story was inspiring. I diagnosed for 7 years in age of 37.
Accepting parkinson disease was very hard for me.
I had ups and downs in my life, because of this disease.
Now mediction works fin fo me my only problem is , I embarrased in front of poeple.
Is there anybody to help me???

ali, Dec 31, 2011

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Bruce, W. Hussey had the information. In fact the woman who started the Pedaling For Parkinsons in Seattle is a friend of mine and she can help you with finding the program and also has PD herself. There are also a bunch of YMCA's that offer the program around the Seattle area. Her name and email is Nan Little, nan.little@comcast.net Email her and she will be a ton of help. If I can answer anymore questions please feel free to contact me. doublehaul3@comcast.net

John Carlin, Jan 5, 2012

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I've had PD for over 10+years,diag.at age 45, in the prime of my life,had an excellent job, 2 great children soon to be in high school, my husbands job advancing, then PD diagnosis. It's been a very rocky road, ups and many downs, fears, frustrations, embarrasment of my looks, not to mention the huge financial-medical costs. But through it all I can't give up, I feel the obligation to fight to continue to live as ?normally as possible; yet that is a daily challenge and struggle, and only other PD suffers can comprehend. Learn all you can, knowledge is power; seek an excellent, supportive Parkinsons Specialist, keep looking until you find the one you are comfortable with. I remain steadfast in my desire to keep trying to find purpose, wisdom and most of all faith to keep going, I set goals and review often. Create your bucket list then check them off. I have discovered in my own journey ALL people have limitations, vunerabilities, insecurities, but each of us also have strenghts, lessons to teach and learn and there are many along the way who are willing to help, give and to care. Its day by day, helping others we help ourselves.

s.read, Jan 6, 2012

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My father just celebrated his 79th birthday on January 5, 2012. He was diagnosed with PD when he was 58. Looking back, we saw symptoms 2 years earlier. At the beginning, he was told all cases are different, but he could be in a nursing home within 5 years. He chose not to let PD define him. Instead, he continued his regiment of daily exercise, healthy eating and continued his hobbies of antiquing, golfing, fishing and wood carving. 21 years later, he is still with us although in the last stages of the disease. He is still at home and has my Mom, me and many caregivers to provide company and help when needed. He still has his wonderful sense of humor and he is still my hero. May God Bless all those that are afflicted with this disease.

Susan, Jan 6, 2012

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Hi "fellow Susan"! Thank you for your lovely words of encouragement. We with PD hear/read so much about the worse case scenarios, it is blessing to hear about your father.

Susan, May 4, 2012

There is a friend of mine in Seattle that can help you with others that have PD. She started the Pedaling For Parkinsons program in Seattle. It has now also at some of the YMCA's up there. Email her at nan.little@comcast.net She can help you. Hope that helps.

John from Denver. I'm the Kilimanjaro climber , Jan 18, 2012

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Can anyone here tell me about support groups in Canada? I am asking on behalf of a friend, aged 45, who has been living with severe PD for 11 years. She basically requires 24/7 care.

Ien van Houten, Jan 28, 2012

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Hi Ien,

We would recommend that you visit the website of the Parkinson Society of Canada for information about support groups in your area. If there is anything else we can help you with, please let us know.

http://www.parkinson.ca/site/c.kgLNIWODKpF/b.5819037/k.A3A6/Young_Onset.htm

APDA Young Onset Center, Jan 30, 2012

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Hmmm I need you guys... I've been diagnosed now for 10 years.. I'm scared to death of being the lady who needs help 24/7(God bless her!) and I guess I'm doing sbout sverage. I worked up until last year as a teacher (Mostly so my son could finish school). I was pretty exhausted by the end. The thing I am having the most difficulty with is trying to make "progress". In exercise, this means that I get panicky when I experience what may be normal muscle pain- and I back off. Saturday, I helped out at a "Destination Imagination" program at a local school. When I came home, I tried to do my normal stuff(without my normal nap) and I was, of course, exhausted and tired. Then I start feeling like I can never volunteer on a regular basis, because i just can't do it....How, pray tell, are the rest of you doing with goals and "progress". Anyboody have any ideas?

Joan, Mar 6, 2012

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Hi my name is Louie. I was diagnosed at age 48, I'm now 51. The symptoms are slowly getting worse, I have a distinctive gait when my PD plays up. I should be taking 3 sinemet tablets per day but I find that I can put up with just one. I've heard that the more you take the greater the risk of getting dyskenisia. My mother has PD as well and she's doing OK although some days it can be pretty bad for her. I live in Melbourne Australia. I'm a cop and scared stiff about losing my job and career. I've heard that their having success with CLR15 at UCLA in early trials. does anyone know how one can get on a trial.

Louie, Mar 6, 2012

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there is an excellent blog site from a lady in Australia with PD. Her email is karyncurly@hotmail.com.

Marshall, Apr 3, 2012

Louie, I am NOT a doctor, but can speak from my own experience. I put off the proper dose/freq of Sinemet from fear of dyskenisia and it was a mistake which robbed me of months of quality of life. I now take a low dose 5-6 times a day, and to see me you would not know I have PD. This from barely being able to speak, move, write, etc. I think the theory of putting off the Sinemet may be shifting some, but regardless, for me, I know it was the right choice. Blessings to you.

Susan, May 4, 2012

Loved this post, John.

Michele smolin, Nov 1, 2012

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We put a book out about the Kilimanjaro climb. It is create read. Get it at Amazon.com "More than a Mountain" by Lori Schneider

John, Dec 29, 2012

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