Stories

Robert Ponder

I Wish I Had Known

Diagnosed at 34

My name is Robert I am 43 years old and I have Parkinson's. I would like to tell people that don't know, that the symptoms of Parkinson's can be mistaken for many types of nerve disorders.

About nine years ago I started trembling in my right hand, just enough for it to be noticeable to myself and family. I got used to it and carried on with my every day activities and it slowly became worse, especially when I relaxed or was eating, so I went to my local doctor and he was sure that it was anxiety or nerves and gave me meds accordingly. Well, as time went on my tremors became more noticeable and my balance was getting bad and my movement was slowing. I couldn't understand it. I was young and always felt tired and sore and felt like I was 30 years older than I was.

Well as the years passed, and the symptoms grew, I began losing my balance and stumbling around at home as well as at work. Then one day I fell at work (keep in mind, I had hidden it from all I could) and hurt my leg. I went to the doctor for the first time in a few years, and I couldn't hide it anymore. He noticed my walk, tremor, and balance problem right away and sent me to a neurologist. That was two and a half years ago. I was diagnosed then and was given Requip®, a small dose to gradually increase until my tremors calmed down a little. I still have severe trouble with my balance, and I walk with little shuffled steps. It has progressed very quickly. And here's the kicker. I can't work. I'm sore all the time, and I don't have any insurance since my employer cancelled it. Being "high risk" leaves few options for health insurance, I can barely afford my medicine, much less food. So, I applied for social security disability with the doctor's support, and I have been turned down four times. Even though I have worked every day of my adult life, and paid into the SSDI program, I never thought I would ever have to depend on it. To my surprise, younger people with Parkinson's disease frequently have a more difficult time being approved for disability than someone who is older with the same diagnosis, symptoms, and limitations.

I only wish I had gone to a specialist when my symptoms first started and maybe things wouldn't be so hard for me now. So, if you are reading this and have a small shake or a small uncontrolled motion problem, don't put it off, get it looked at! I really hope for a cure for us all. I would love to play ball with my children again. I also hope APDA will publish this, that they are willing to show the bad as well as the good "faces of experience".

THANK YOU SO MUCH

— ROBERT

10 Comments

Dear Robert,

I have the same pain, tremors..ect but the four doctors I have seen keep saying I am just have under stress and anxiety. I pray for help everyday. I two kids that are on ssi and my husband is on ssa because I am 36 I'm to young they say. I need help!

Michelle, Jan 4, 2011

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Robert, I've been reading several stories, but when I got to yours I had to comment. I too had a hard time getting disability. They blamed it on the death of my teenage son who was killed in a car accident. My symptoms started soon after his death. Took years before any Dr. took any notice that I was getting worse not better! I lost my job, home, car! I finally got disability. Your so right it's hard to be younger & have Parkinson's!

Lorri, Mar 25, 2011

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Hello Robert [great name :)]

What medication are you on presently besides Requip®. if you are still sore and stiff as you were, dopamine might be what you need.
A lot of physician tends to try and delay prescribing dopamine, Sinemet®, believing that it will delay acquiring the eventual side effect Dyskinesia.
However nothing beats the true replacement, the dopamine. At this point your quality of life issue must be the priority.

Robert, Sep 28, 2011

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I'm Now taking Sinemet 25/100,,Azilect,and Requip.

Robert, Oct 24, 2011

Wow seems like the same path I'm going down......lost my job, losing my truck, trying to not lose the house. I was diagnosed at 38(now 40)and things looked good, but being denied twice and going for a 3rd is starting to hurt. I think you got to lose all your property til you get help. like everyone says "hang in there?"

Ryan, Feb 6, 2012

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My husband was turned down 3 times, also. It took an attorney to get his SSD. It was social security that gave us a list of the attorneys. Keep trying.

Gail, Dec 5, 2012

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Robert I am 34 I was diagnosed with PD a few years ago I do feel your pain. I have had to change jobs and go back to school I was RN before my diagnosis.

Amanda McGlone, Jan 26, 2013

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Robert Iam 57 yrs. old and diagnosed with PD at 51yrs old.I was lucky that i retired at 55yrs old with 37years at Kroger Company.Was able to received SSD two years ago. I was feeling alot of pain always tired. I came across a wonderful person who teaches execise for PD. His name is David Zid. His program is the best thing for PD.I have been going for 11months. I think it is just important as medication i take,or maybe more.David Zid teaches at COLUMBUS HEALTH WORKS 1387 w. fifth ave. columbus ohio 43212 614-486-3860 I go 2 or 3 times per week.It will make a big improvement in your life.Hang in there and exercise!!!!!!!!!!much as you can.It will help,

sandy mcknight, Apr 3, 2013

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i have been reading the comments.I had no problem with my benefits the nurses i see put me in touch with the parkinson support and they came out and done everything for me .i am 52 so keep trying

sue, May 12, 2014

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Correction. ..I first shown symptoms at 34 was not diagnosed until I was 42...7 years ago..sorry for the mix up.holding my own and doing fair..be blessed .everyone

Robert, Oct 26, 2014

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