Stories

Cat's Story

I am a Warrior

Diagnosed at 45

In 2002, at the age of 45, I was in full stride as a wife and mother to two daughters. An active participant in our community, I served as a communicant in my Catholic church and was dedicated to my excellent work as a speech language therapist to children with special needs. An accomplished seamstress, I made much of my own clothing as well as my daughters’.

I had always been athletic (a former tri-athlete and soccer player two to three days a week), so beginning in 2001, I noticed immediately when my left arm stopped swinging normally. I had broken my right arm the year before in a soccer injury, but when my teammates began asking about my odd running gait on the field and assumed it was because of my prior break, I began to take it more seriously. I kept procrastinating, because I feared the necessary MRI. After I slammed my slower-moving left hand in the van door while putting my kindergarten-aged daughter in her car seat, I knew something was seriously wrong. The two sides of my body were not working in synch.

I had no visible tremor of any kind, but for years had fought depression and anxiety that began spiraling into panic attacks without reason. Alone in my neurologist’s office that day, I remember seeing her sprawling handwriting on the sheet of paper spelling out her diagnosis and treatment plan. I was shocked, but called my then husband and had to convince him to meet me.

When I tearfully told him at our local coffee shop, he reached across the table and replied, "We are in this together." But this was the last we were to speak of it until I left two years later. Our marriage, never very intimate to begin with, began to feel the brunt of my mood states, and my reaction to the the dopamine agonist I was originally prescribed. In 2002, the pharmaceutical companies making dopamine agonists warned only of gambling as a possible side effect. No one emphasized the possibility of personality changes or hypersexuality/obsessive computer use as a potential danger. I was in too much denial and embarrassed to introduce it in our marriage counseling sessions.

Sometimes I look around me and wonder how I got here; Today, at age 55, I would handle the whole early period of Parkinson’s disease differently. I would recommend to anyone newly diagnosed with this devastating disease to seek good counseling support for their primary relationship, financial planning for an uncertain future, and most importantly, if on a dopamine agonist, to honestly tell their doctor and partner if obsessive behaviors increase. (The shame of the abnormal behaviors can make it difficult for people with PD and their caregivers to discuss and see them as a symptom not of the relationship, or the disease, but the medications.) I personally think these side effects are under-reported, even today.

The diagnosis of PD is tough on any relationship. Be aware that many symptoms of PD such as facial masking and nonverbal language issues can make your partner feel as though they are being taken for granted. Be very careful to appreciate all that your partner deals with and make sure they understand this.

My work performance suffered with my increase in obsessive behaviors, and my school district did not honor my accommodation requests. I went on medical leave before and after DBS; then hip replacement surgery. I had to finally retire this past year. My private insurance disability covered only 60% of my previous salary. Worse, after I was granted SSDI (per their requirement), the insurance company considered that taxable income and took that off my monthly check. I now am also responsible for my monthly medical insurance premiums, in addition to my pharmacy and many medical co-pays. I will not be eligible for Medicare until June 2013. My mortgage is more than my current income and yet I cannot sell and move until my youngest daughter graduates high school in 2014. My current income is less than 30% of what it was when I was able to work. How many of us could live on 70% less?

I am single, dating, and have Parkinson’s disease, which I can no longer hide. (Try telling “your story” on a first date). Plus, I am finding my “BS detector” is no longer reliable and have found myself in more than one predatory situation. As a single woman with Parkinson’s disease I would caution others to beware that medications ~ and the disease itself ~ may make your judgment questionable. Use trusted friends and family to give you perspective and kind feedback. In lieu of this, find a counselor. I cannot regret my decision to leave my marriage, yet would caution others to do EVERYTHING they can to improve their relationships, including using brutal honesty, TODAY. Reconsider your ability to afford to live in an economy that allows disabled people to fall through ever-widening cracks.

I will never be the kind of person that will truthfully say “I feel blessed to have YOPD.” Yet, I agree with the saying, “Whatever doesn’t kill you makes you stronger." I am choosing to live my life well, setting goals, being an advocate for those who need my voice, my daughters are thriving, my garden is blooming, and I am a Warrior.

15 Comments

What you have written should be extremely helpful to those newly diagnosed with PD.

Donna, Jun 3, 2012

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I wish I could talk to you. I am in the same situation.

Karen, Jun 3, 2012

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Thank you for stepping forward and being honest.

steve, Jun 6, 2012

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@karen: you are welcome to read my blog and begin a dialogue there:

http://indigobuntinggurl.blogspot.com/

you are welcome, Steve. You know how I feel about making a difference. :)

cat, Jun 7, 2012

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Thank you for sharing you forever changing life. Its a wakeup call for me. I'm also living with parkinson. I aways thing I have a few more good years. That makes 17 years

Doug, Jun 18, 2012

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am in london, 42 years old, diagnosed at 38 after 3 years of symptoms and being told twice in those two years by a leading neurologist the there was nothinig wrong with me. I spent my £200k insurance payout in deep shock on cars,parties, dresses, shoes, holidays, not working, my finger on self destruct, got pregnant and returned to the UK bowed but not broken.

I am now a single mum to the most beautiful girl in the world, she has brought love and hope into my world, freezing started last summer & occurs mostly in tune with my mental state. I still work in a highly pressured job in TV and am in the throes of setting up my own business but will have to sell my home to pay some debts.

Life is a roller coaster of uncertainty and loneliness making decisions and lifestyle choices alone - i thought my parkinsons would be secondary to me on the dating scene but no i might as well be a leper!

i think to myself everyday 'you can handle this, you can fight this, you can live with this and then i read something which makes me think s*it this is really serious really serious but i am not going down without a fight - thank you for being honest - i played my cards badly and now need too get it right x

mariposa, Jul 3, 2012

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mariposa, your story brought tears to my eyes. It's difficult not to think of yourself as "damaged goods" and yet dating requires a lot of energy, putting yourself out there, and deciding whom to trust. I have nothing to offer but a hug and some words: set some goals, keep track of the ones you do attain, allow your precious daughter to provide the hope we all so desperately need, and make sure your activities are moving you towards what you want. I too have to choose to fight this disease, alone, which is the ONE thing I most feared. See, the thing is, when you do everything in your life to avoid its reality, it kicks you in the tush. So your life goals should be ones you can obtain without a partner, then get busy living them. One will come along one day when you least expect it. HUGS, C

cat, Jul 23, 2012

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OMG...I am scared

andrea, Aug 8, 2012

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Andrea..hugs. It's normal and ok to feel scared. I am scared too, and I think most humans are scared whether they have a chronic disease or not. PLease find a counselor or good support group to talk about fear and cutting through the denial of reality. Use whatever you can to make it through each day: faith, love, hope, are all important. Hugs and keep talking!

cat, Aug 22, 2012

I too am single with no family and very scared. My boyfriend of five years left me. Very frightened to date as I am 60 , but very afraid to be alone.I was diagnosed just four months ago.

Lindy, Sep 28, 2012

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22 years in marriage that has never been the best, past 13 years stay at home mom/ housewife. Spent last two years being told I had anxiety problems and they were causing hand tremors and extreme fatigue. Anxiety and depression meds did nothing to help if anything they made things worse. All of this going on I found out just how bad my marriage was, husband was and still is unsupportive an has become increasingly verbally abusive. Two years off being labeled mental by doctors, hospitalized for suicidal thoughts ( while on antidepressant, quit taking it thoughts went away). This past summer I was sent to neurologists, diagnosed with tremors, his ideal of treatment was more antidepressants ( wasn't going there again) went to second neurologists for for second opinion on treatment options for tremors. He tested all my motor skills (first neuron did none of this) , I never noticed my balance was so bad. Hour later was told I had young onset Parkinson's. Was told it wasn't going to kill me an that everyone has something. Was put on Senimet. For first time in two years I felt like me again, I actually cried was so relieved thought all was going to be ok now. Not so fast. Personal life was an is beyond repair. I have 10 year old who didn't have much of a mom for two years, trying to make up for that. Don't get brownie point's for being mom/ housewife so getting job to pay enough to leave bad marriage not going to happen. Recently lost health insurance , senimet not working as good it was. All of this I have no family or friends to lean on. No were to go. But I am still here. Will most likely spend rest of life alone ( don't care starting to like it) Kids come first. If I have learned one thing through all of this is I am stronger than I ever imagined, and acceptance equals peace. Right now I'm working on becoming an advocate for PD through Parkinson's Action Network. They have online course ( 4 hours long) . My goal is to put a pamphlet together that could be put in doctors office's. One that would outline early symptoms of Young Onset Parkinson's and questions to ask doctor.Also put something together to send to doctors, raising there awareness of YOPD. There are things I cannot change at least for now, but there are things I can do help raise awareness for people with PD and that alone has given me a purpose to be.

Rk, Oct 21, 2012

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Check out this website: www.rocksteadyboxing.org

It helps! I was diagnosed 9 yrs ago at 46. Because of this boxing program, I'm doing good. Right now they're in Indy, but trying to expand to other areas. Be sure to read the stories under Boxers Corner.

Debbie, Nov 7, 2012

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Have you tried this new drug called pimavanserin on clinical trials currently? It helps in the neurological issues associated with PD. Its known to help tremendously instead of being on dopamine that has tremendous behaviourial side effects that you mentioned.
your strength is inspiring. be well

judith, Nov 24, 2012

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WOW, WHAT AN INSPIRING STORY. I ACTUALLY CONCERN MYSELF WITH THE OCD EVERYDAY LIVING IN RENO, NEVADA..I'M IN THE PROCESS OF GOING THROUGH THE DBS PROCEDURE.

JAMES SHOWERS JR, May 12, 2013

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Finally, someone tells it like it is to have Parkinson's Disease. I was diagnosed at the age of 49, twenty years ago. Yes, I am still here and, I am told, doing exceptionally well. I somewhat agree, but just because I "look wonderful" does not mean I feel wonderful. Through the years I have found that because I have been able to mostly hide or disguise my symptoms, people are surprised that I have PD. They do not know the pain I go through daily just getting out of bed, getting motivated to do anything. I drive myself to exhaustion with these obsessive compulsive actions. It's like someone inside my body has taken control. I am on so much medication just to make it thru the day and then flop into bed too fatigued to sleep. Throughout the past 20 years I have been involved in many PD activities. I was actively involved in starting a support group for young onset. I have been involved with fund raising, etc., etc. and it was very rewarding to be able to "counsel" the newly diagnosed. But, at the end of day the PD was still there. It is with you every second of your life and it constantly reminds you.

Through this journey I have met many wonderful and caring people. And for that I am thankful. I would rather have met them thru other means. I do not look forward to my future. I want to see my grandchildren grow and be a part of that. There are days that I don't want to wake up because of the physical and mental pain but I do it because I don't want to miss anything.

Thank you for sharing your story. We all want and try to be positive about this disease that is so unpredictable and consumes our life, but sometimes we need to tell it like it is and not sugar coat it.

Linda Kenney, Feb 2, 2014

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