Young-Onset Parkinson’s Disease Almost Took Away My Life: DBS Is Bringing It Back

Member for

6 years 11 months

I’m what people refer to as a “late bloomer.” Met the love of my life at 28. Had my two daughters in my early thirties. Graduated with my MS in physical therapy at age 41. Desite my late starts, life was good. I had a great career with a unique specialization. My husband and my daughters and I were taking regular vacations together and I loved what I did.

Then I noticed a slight, persistent tremor in my right hand. Being a medical professional I immediately began researching possible reasons for this newfound symptom. I thought that it was result of my neck. I knew I had some arthritis and probable nerve root damage from the pain and parenthesias in my upper extremities.

I remember reviewing the symptoms of PD and blew it off because like many other YOPD patients, I was an active person – I enjoy staying busy and doing outdoor activities - and I am regular exerciser, I was only in my early 40’s and I just knew that could not be my problem. No way! I had evaluated and treated PD patients and they were all old!

To make a long story short, I was diagnosed with YOPD on 4/4/04 at a 4pm doctor appt. (you don’t ever forget something like that) at age 45 (so much for the late bloomer theory). I was devastated and convinced I had just been given a life sentence with no hope of parole. About 10 months later, cervical dystonia made it’s ugly appearance and it just got worse from there.

By the grace of God and an understanding Boss – I managed to work 4 more years – until the office manager asked me to “retire.” Having never been fired, layed off, or even disliked by anyone I ever worked for, this was yet another heavy blow to my psyche. I completely understood , however, since patients were noticing something was wrong with me during those last months at work, and I graciously left the career that I had worked so hard to obtain.

A physical therapist should be physically able to handle patients, and I was losing confidence in myself so I thought perhaps they were as well. Since I worked with dizzy patients there was fear that I might fall with one of them because of my poor balance. Kind of ironic since it was my job (and my pleasure) to help others with balance problems!

My neurologist had been after me for quite a while to surgically treat PD but the options were not appealing to me; either brain surgery or a new surgical treatment which involved a tube sticking out of my gut (eewww… nasty! Look up “Duodopa”). The first option scared me to death and the second one just grossed me out.

My biggest problem from PD was very disabling dystonia, which was now affecting my entire body. Not only did it put my life on hold because it was now an every day occurrence, but it is also excruciatingly painful. My second major PD problem was balance. Almost every day I was falling and hurting myself. I finally had to face reality – the drugs were no longer helping me.

I made a decision to have deep brain stimulation (DBS) surgery. I had part one of the surgery (the worst part) performed on 11/25/09 and the second part on 12/18/09 and although it was a grueling surgical procedure, I’m sorry I did not do it earlier. What a difference! I HIGHLY recommend DBS to any PD person who is no longer functional with the meds! It’s not for everyone and you must be a suitable candidate.



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