Stories

Bonnie

From Struggle to Support

Diagnosed at 46

Six years ago, I was diagnosed with Parkinson's disease at 46. Now I look back, 10 years prior to my diagnosis, and see early signs - indicators that something was happening to my body.

“Snack Queen” was my nickname. I always had something to nibble on in case I felt shaky throughout my day. Restless leg syndrome and chronic sinus congestion explained my balance issues, body aches and lack of smell. Statements like, “Opps, there goes my shoe” or “can you open this, my shoulder and wrist hurt from holding my new grandbabies” surely didn’t mean anything serious was wrong! I can still remember the look on my doctors face as I explained away, why I couldn’t sit still on the examination table and why I nearly walked into the wall while turning the corner to his office. I believe this is when my story truly began.

I didn’t need a snack, I needed more dopamine! My husband and I sat speechless, as my neurologist rolled his stool close to my face and repeated, “You do understand, you have Parkinson’s!” I think he expected us to fall apart or be overly emotional with the news, but like most trials in our lives, we had confidence and faith see us through. I was always told two things: 1) know your disease better than your doctor and 2) more information is always beneficial. So I took to the Internet, sent for books on the subject and resourced many web sites for young onset patients. Next would be to meet others with like symptoms and see how Parkinson's had changed their lives?

I saw an ad in our local paper in April (Parkinson's Awareness Month).  A neurologist in our area was having an open house and all were welcome. I will always be grateful to have found these new faces. They would make living with Parkinson’s easier and become a benefit from having the disease. I went on to join a new young onset group as well as an established Parkinson support group in our community.

I know the medications are necessary, the fatigue and emotional changes all come with the disease. On and off times and the value of a nap each day are part of the package too! But the courageous, wonderful people I have come to hold dear to my heart are priceless to me. Parkinson’s is frustrating, painful, confusing and embarrassing at times. But the gift of support from other sufferers is so valuable and life altering. This is truly the best part of my story I have to share. Parkinson’s will change your life, but don’t pass up the opportunity to be part of a community of rare, brave and, yes, sometimes grumpy people who can make this mountain easier to climb. Lord willing, I can in turn help another with my support to make life a little easier to live.

5 Comments

This related to me because of your age, lack of smell, arm pain and doctor experience--all are similar with me.

Bruce Piombo, Jul 30, 2011

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how long was it till you were diagnosised and how long have you been diagnosised? are you involved in a young onset support group? What area are you from?
Isn't amazing how similar and yet how different we all are.. I had cortisone injections because of the wrist and shoulder pain....some tell me they had major surgeries to improve back pain ect. come to find out its PD showing its confusing symptoms. Thanks for sharing. and remember were not alone. really I have been blessed by our support groups.B

BONNIE VARIAN, Aug 1, 2011

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I'm just wondering if the women in this group going through, I hate this term, the change of life, (already had one thank you), anyway, what are your symptoms? Do you find that your hormone swings have anything to do with your parkinson's symptoms getting worse?

From menopause, lack of sleep, haven't walked on the treadmill in 2 months, could care less, just a bla feeling. Which leads to maybe more shakes, almost impossible to write at times and had an "episode" of looking like a fish out of water at pilates class. Scared me and instructor, my doc said...."take another pill". Is there research about hormones in women and the effects of parkinson's symptoms? Has this happened to any of you?

Cindy, Aug 6, 2011

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At my present age of 52, I have entered the “time of life change” (as my Grandmother called it) When I say entered it, I mean really, without a doubt, know my cycles are changing and my reaction to hormone levels are drastically increased. Lets say, I can’t seem to find any peace within the anxiety and frustration of just being awake for about 3 days of the month. When seeking advice from my doctors, they just have that half smile and say, you must be entering Menopause. That I knew!
I agree everything seems a bigger struggle and harder to deal with my PD. Tremors are worse, fatigue is increased, slowness in thoughts and keeping focused on anything seems more difficult. Then, like a miracle, my cycle is lighter and I have a clearer view of who needs an apology! My poor husband, hangs in their knowing "this too shall pass!" I hold on to the hope, if I don’t sweat to death first, I will be “cycle free” with PD enjoying those senior discounts soon! Hang in there girls, just because no one talks about it, doesn’t mean your alone! Thank you, Cindy for sharing. If anyone finds any research on the subject or helpful advice please let us know!

Bonnie , Aug 21, 2011

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THANK YOU FOR SHARING YOUR STORY. I JUST RECEIVED A CELLULAR TELEPHONE CALL CONCERNING A MEDICINE I TAKE FOR RBD, SOMNAMBULISM AND INSOMNIA-CLONAZEPAM. THE DOCTOR MENTIONED THAT I WAS CONCERNED WITH THE EFFECTS IT WOULD HAVE ON MY MEMORY, I MAY HAVE MENTIONED THAT, BUT I THINK MY MAIN CONCERN WAS IMPULSE CONTROL DISORDERS OR DRUG SEEKING BEHAVIOR..IN MY DISEASE, I'VE TAKEN THE MEDICINES ALL THE WAY DOWN TO ONE AND COUNTED THEM AS HIGH AS ELEVEN. WHEN YOU MENTIONED THE SIGNS EARLIER,I WAS LISTENING TO A GENETICIST WHO STATED 150 AND COUNTING...WE KNOW HOW TO MULTITASK....I WAS LISTENING TO A QUOTE EARLIER, THAT WAS QUITE FUNNY: 'EGO ONLY GETS YOU SO FAR!'....MY NICKNAME AND AT ONE TIME ACTUALLY RAN FOR THE GUINESS BOOK OF WORLD RECORDS, FOR THE FASTEST BUSBOY-FLASH (((HA,HA,HA)))

JAMES SHOWERS JR, Jun 28, 2013

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