Can One Become TOO PARKINSON’S ?

I have had a very busy November, 2012. What have I been doing? Educating myself about Parkinson’s Disease. I have Parkinson’s Disease. My first symptoms started as a tremour when I was 45 in 2005, then dystonia ; single limb focal point dystonia in 2006 of my right dominant arm. In 2007 I was told I had parkinsonian symptoms and was given artane by a neurologist to see if it would lessen my tremour. It didn’t. Time out  for anterior discectomy and fusion of C4/5 in 2008. In late 2009 I was prescribed my first sinemet. It had immediate effects. My tremour disappeared. I was referred to a MDS in Vancouver. On Feb.3 2010 I was diagnosed with Parkinson’s Disease at age 50 and started on sinemet 100/25 CR. I responded well to the sinemet and physically felt better. My quality of life was better. I continue to take sinemet 200/50CR at present and continue to rely on the pills to improve my quality of life.

I am a physiotherapist. I stopped seeing patients in 2008 and retrained in Disability Management at the National Institute for Disability Management and Research. I went back to work in the field of disability management doing rehabilitation claims for Sun Life Financial. I was and still am a physiotherapist. I stopped working in 2011 due to great fatigue and inability to use the keyboard fast enough to do my job duties. I was getting much dystonia from the activity. Since then I have been studying Parkinson’s Disease as a healthcare professional. I have Parkinson’s Disease but I am also a physiotherapist.

This past month I have taken Becky Farley’s clinician course PWR/Exercise4Brain Change, attended a one day workshop with the MDS on Evidence Based Medicine Update on Treatments for Parkinson’s Disease and attended a one day YOPD conference sponsored by the BC Parkinson’s Society. I continue to volunteer in my local community helping PWP with a Falls Prevention Clinic which includes follow up on the patients who need help in their homes.

Have I become too Parkinson’s? Someone told my husband that it is great what I have been doing however I need to be careful not to become too Parkinson’s. I listened to the neurosurgeon speak at the YOPD conference report on his outcomes after DBS and he said one patient came in for follow up and told him he took away his PD symptoms but ruined his life. He didn’t know how to live without his PD after living with it for 15 years.

I am perplexed. What does too Parkinson’s mean to someone living with PD? Can you be too pregnant? Can you be too focused on your cancer diagnosis? Too much a physiotherapist? Too deaf? Too much a parent? Too much a spouse? Too??

Parkinson’s is a chronic neuro degenerative disease that has no cure. In other words I am going to die with Parkinson’s Disease. I want to learn as much as I can about Parkinson’s so it can become my best friend instead of my biggest enemy. I want to have the best quality of life I can with PD.

Am I too Parkinson’s?

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I am physiotherapist diagnosed at age 47 with Parkinson's disease. Volunteer in my local community with parkinson specific exercises for PWP. Founder of ParkinGo Wellness Society, www.parkingo.org .Tireless advocate for better quality of lives for people living with PD across the global community.Ambassador for www.parkinsonsmovement.com and a Global Ambassador for WPC2016 Portland Oregon Sept 20-23

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21 comments on “Can One Become TOO PARKINSON’S ?
  1. Jill, It is so great to see you blogging. I’m looking forward to reading all of your posts.
    Are you too Parkinson’s? I would say ‘absolutely not’! You want to learn more about it too not only help yourself, but also to help as many PWP as you can. If being “too Parkinson’s” means caring too much, or learning too much about something you have to live with the rest of your life, or learning too much about how to make peace with PD and live in harmony with it, then “yes”, you are too Parkinson’s. And, I hope to someday be “too Parkinson’s”, too.
    Does this “too Parkinson’s” mean we talk about it too much with our family and friends? No, I don’t think so. I try not to talk about it too much with family and friends. But, if there is something I think they need to now about PD and me, then I tell them. whether they like it or not.
    Keep this up, Jilly!
    Love,
    Tonya

  2. Peter Thompson says:

    Hi Jill and Tonya. Good perspectives. I do think that if I focus too much on the PD, my symptoms get worse. One cannot be over educated or too informed but one should not lose sight of everything there is to enjoy in the world on account of being locked in the sights of the PD moments.

  3. hi jill i was told i had parkinsons in 2006 it shocked me so much that i kept it a secret i was scared i might die silly i know but for 2 years i kept it to myself telling my wife i was just going out when i was seeing my neuro surgeon now every one knows and iam learning more and more about parkinsons and people like you and the other people on this site lee, sue, alan , are my inspiration how the hell can any of us be to parkinsons we live with it every day and night the more we know the better we can live keep up your great work i love to read what other people do and how they cope

  4. Ryan Tripp says:

    Thanks for starting this post Jill and the follow-up comments by Tonya and Peter. Like Peter, I have found that too much attention, debate and certain activities have not lead to a good symptoms outcomes for me.
    Living alone, I definitely spend extra time, reading, updating, and educating myself whenever possible. This enables me to fulfill a role that I have accepted with personal and public advocacy in my community, province and country. However, when it comes to family and close friends, they get enough from me incidentally that I am very cognizant of the Parkinson’s topic, plus how often and when I bring it up! Important issues are not withstanding!
    A good balance of activities and conversation are best for everyone. Besides, they would think something is wrong if I didn’t take about sports and athletics!!

    🙂 Ryan

  5. Yes family and friends are at risk of getting overloaded, but I can say in my world my true friends ask me before I bring up the topic. If I did not have PD I would still be a physiotherapist, still take courses to keep me up to date in my profession. My family and friends would continue to consult me on their aches and pains. I live in a small community .I can’t go anywhere without running into someone who has a health issue and they continue to ask me what to do about their sore shoulder, their mother who needs a total hip replacement, etc, etc,. Knowledge is power and me with my physiotherapy background can’t help but study Parkinson Disease and find out how I can live the best quality of life with PD. Being a part of the healthcare team for 30 years doesn’t stop at retirement , however I continue as the care giver,not the patient. My interest in PD is about me living with it but more importantly to me it is about finding a way to continue my life long passion to help others.I have to be educated about PD if I am am going to advocate for PWP to have the best quality of life. There are so many PWP who fall through the cracks and have isolated themselves. My quest is to change the system of how one with a chronic neuro degenerative disease with no cure is approached by the healthcare team. I believe our care should be patient driven not doctor driven. The only way I can change this is to keep myself in the system. I still have other interests in life, for those who know me 2012 has been a year of extensive travel, and oh ya going to rock star concerts!,

    • Carla says:

      My husband has Parkinson’s and I am a social worker and I obsess about it all the time. I read everything, go to everything, talk about it constantly and am lobbying his doctor for DBS. He does none of this. I don’t know where the mix is in things. I constantly think about what we need to do to be able to live as we grow older and how we will survive financially. I keep looking for something that will change his diagnosis and our future but it isn’t there. I don’t think you can be too Parkinson’s but maybe it is becoming too little “not Parkinson’s”. Thank goodness for places we can talk to each other about this!

  6. cindybittker says:

    I participated in a clinical trial on Cognition and Mood in Parkinson’s disease and the researcher, a female psychologist asked the question, “Other than Parkinson’s disease, how do you feel?” I laughed to myself and all I could answer was “Other than being a woman, how do YOU feel?” PD is embedded in our lives, for better as well as for worse.

    Participating in the Parkinson’s disease community is both nourishing for the soul and much needed. Because until there is a cure, we are a community.

    So much bizarre stuff happens to us physically, cognitively and emotionally every month, week, day hour and minute When I share, talk and listen to other PWP — we all understand that we’re not complaining, just trying to understand, trying to solve our puzzle. So, for me, being involved with the community PWP is a win-win. And as we all know, PWP are the best!!

    Sometimes, however, I need to take a mental break from concentrating on Parkinson’s disease and even thought I have a certain baseline of concentration on my own body moment to moment, I find I am turning more to music and arts to take a breather, a break.

    The absolute best way for me to do that is to be with my granddaughter, who is almost two. I’m her “Nana” pure & simple. She has no awareness of PD!! When I’m with her, I’m truly in the moment with her and her trust that I will take care of her needs, play with her and love being with her gives me a true respite from being a PWP and just being “Na-Na”

  7. Lately, I have been too busy to think much about the PD. I am beginning to see myself as an anomaly. For whatever reason, my symptoms are diminishing and I am using less meds than ever. I found that Requip was making me nauseous too often and so I have pretty much given it up. Levocarb is good and effective but I have cut down from six per day to one to four as needed. So I ask myself, “What’s different these days?”. I got through prostate cancer last June and two back surgeries in the previous year. On the positive side, I have given up most of the stress from being a lawyer (still some wrapping up of business to do) and I am spending more time enjoying life (especially warmer climates!) and doing things I enjoy such as fishing and boating. I am seeing my children more than I had been and this helps psychologically. The other variable is that my house now has many crystals of many kinds such as amethyst. Despite some skepticism, I am now more of a believer in the energy fields in what is around us and within us. Science and medicine seem to be heading toward greater use of stones/crystals is treatment and there is much on the Net now about “being in tune” or “harmony” with one’s body. The next step is for me to increase fitness and cut out some sugar from my diet. I am sure that this can only aid in the PD fight. I think it is important to do positive things and I know that if I focused too much on PD, I would find myself back in freeze mode as worry creates a vicious cycle which amplifies itself.
    Glad to hear others who are coping and positive. I see those in worse shape than me and I am thankful that the disease has not followed the anticipated downward spiral over these dozen years since diagnosis. Happy and healthy new year to all!

  8. Carol Meenen says:

    Hi Jill: I am very active in the PD community and I have made so many wonderful friends that I would have never known if not for the diagnosis in Apr 1992 almost 21 years ago. I was diagnosed at the age of 49 and I wondered why me? “Well my doctor asked me why not you?” So I decided to make something good come from my diagnosis. I think I have come a long way in all those years. I have tried to help all I could to realize what they are dealing with, and to well educate themselves about this very debilitating disease that so many of us suffer. I am a mentor of the young onset and for the newly diagnosed. I try to help them cope with the newness of their illness and encourage them to know that your life is not over. For some it is just the beginning of a new world that you can make it through comfortably if you just set your sights high and move on. I became a poet and I would never have done that if it were not for the PD. I wrote poems about a lot of my friends and they loved it. They thought it was so neat. I traveled near and far to let people know it was not the end of the world. There were some adjustments you need to make with your new life but that could occur with any situation. I always tried to think that this was the first day of the rest of my life and I wanted to help people, and it was so rewarding. I have accomplished a lot in the past 21 years.

  9. Peter Thompson says:

    Sure, I get angry sometimes but it’s wasted energy and doesn’t help the PD. If I got pissed off about the cards I have been dealt physically, I would take root and never get anywhere. There’s just too much to enjoy in life and so many people worse off than me. Had this happened to me before levodopa was discovered, I might have looked for a high cliff but I’d want to do myself in while viewing a beautiful sunset on the way down and probably would change my mind half way.

    • Thanks for bringing me back to terra firma. I’ve never said that ‘out loud’ ! I must have been overwhelmed about the sheer freedom of being ABLE to talk about it. Think I’ll go back to writing, painting & exercise! Thank you for your honesty – I needed that! Cheers!

  10. I love that you trained with Becky Farley… she is an incredible resource! I wrote about her here: kaitlynroland.wordpress.com – exercise for brain change

  11. Jillian, I’m like you, my activism tends to be rather consuming, in my case for dystonia. I blog, serve as a dystonia advocate, volunteer, fundraise, co-moderate a patient support group and undertake vigorous awareness efforts on my social media. I could pose the question am I too Dystonia but it’s my passion and my reality. I’m able to do this important work, seems an awfully good reason to continue. -Pamela-

    • I find it very therapeutic, and there are so many sufferers , who are isolated, it breaks my heart

      • Jillian, I find all you do to be inspirational, not everyone is able to put in that sort of effort. Good for you I say. And I agree, my activities are very therapeutic, with no cure of our disorders in sight, it’s nice to be doing something. -Pamela-

  12. Toby Katz says:

    Hi, I have been reading your blog this evening and I have to say that my attitude is what helps me get by. I was diagnosed 8 years ago when I was 52 I have recently had deep brain stimulation surgery. I also write a column for the PDRS Midwest division newsletter I have to tell you all that the surgery has been a god send My meds had stopped working for me and I was having negative reactions to my meds. I had run out of options Now the combination of meds and the stimulation have given me my life back It is nothing short of miracle !!! Of course I still have bad days, and of course Parkinson’s impacts my life in a profound way but I workout 3 times a week with a trainer, take cardio dance classes, constantly walk, and never do I take for granted the gifts I have been given rather than think about the things that this disease has taken away. My attitude towards life has gone through a major change. No longer am I willing to waste my time or precious energy on the negatives I refuse to believe that Parkinson’s will be my undoing My children have become the president and vice president of the junior board of the PDRS Midwest division
    I am not looking at Parkinson’s as a curse but rather a challenge, one that could be much worse if I had been diagnosed with countless other diseases We are all different, having different symptoms, and different challenges. Please understand that I am not minimizing what any of you are going through, I do not look at this disease through rose colored glasses, but I do refuse to throw in the towel, it’s just not in my nature. I am amazed every day by the strength and perseverance that you all exhibit each and every day I am amazed by the determination that so many of you exhibit I am honored to be a part of this group

  13. db4pws says:

    Love your phrase “too Parkinson’s.” That is a keeper. “Too” implies you have passion, and passion will probably helps you deal with PD better than most meds. Keep bloggin, Jillian!

  14. I can say since I wrote this over a year ago that no! no one can become too Parkinson’s ! The more I learn , the better I feel, less anxiety , more eneergy to advocate , exercise and laugh! oh ya laughter , great medicine. My best advice is to get out into the world everyday..go out and forget your PD , dont care if people look at you, tell them you have PD, educate them , please dont let the diagnosis stop you from living a good quality of life. it is so musch easier to isolate yourself but that is the worst thing you can do with PD. Learn from others . There are so many brave courageous people in the world with big big lives…be one of those, you can and then keep on fighting for the cure. Have great days everyone. See you all at WPC 2016 in Portland Oregon!

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