PD Symptoms and Diagnosis

Sometime in 2002 my thumb started to twitch. It  was annoying but tolerable, It only twitched when my hands were completely at rest so I ignored it. Six months later my little finger started to twitch too. Within weeks my left hand seemed to have a mind of it’s own,I started dropping things. One of my co workers waking behind me in the hall told me that they noticed that my left arm no longer swung when I walked. Little alarm bells went off in my head but denial stayed firmly entrenched. A few months later my left leg felt like it needed to run even when I was in bed and the rest of my body was trying to sleep.

I finally went to the Doctor and was told I had an Essential Tremor. He put me on Requip and sent me home. A year later, after I started freezing in place,the diagnosis was changed to Parkinson’s Disease.How could they get it wrong? Surprise! There was no test for Parkinson’s. Diagnosis can only be made through progression of the disease and drug efficacy or failure. Pretty much, if Parkinson’s drugs work, then you are diagnosed with Parkinson’s. Doctors also use the Hoehn and Yahr scale for the staging of Parkinson’s disease, which is broken down into the following stages:

• Stage one: Parkinson’s disease symptoms affect only one side of the body.
• Stage two: Symptoms begin affecting both sides of the body, but balance is still intact.
• Stage three: Parkinson’s disease symptoms are mild to moderate and balance is impaired, but the person can still function independently.
• Stage four: People with stage four Parkinson’s disease are severely disabled, but they can still walk or stand without assistance.
• Stage five: The patient becomes wheelchair-bound or bedridden, unless someone is helping him.

I have Young Onset Parkinson’s, It means I contracted the disease before age 60. The National Parkinson’s Foundation states  that the following are more common in Young-Onset PD patients:

• A slower disease progression
• An increased rate of dystonia (sustained abnormal postures, such as turning in or arching of the foot and toes) at onset and during treatment
• A lower rate of dementia
• An increased rate of dyskinesias in response to L-DOPA treatment.As is the case witholder-onset Parkinson’s disease, the speed and severity of the progression of Young-Onset Parkinson’s disease can vary greatly among individuals.Doctors may be able to tell you how far along you are on this scale, there is no accurate way of predicting how soon you will get to the next stage or even if your disease will progress. There is no cure but there are a number of drug therapies that treat or delay symptoms.

After 13 years I am still Stage 1.Only my left side seems to be affected.If I don’t take my meds on time I tremor and start freezing. I also tremor if stressed, cold, sick,tired or hungry. Some mornings, I need to either stay in bed until my meds kick in or use a cane. I can still bike, skate and do some yoga. I still work full-time and attempt to dance (though I look like an epileptic on crack). I still drive. Yes, I passed my behind the wheel test last year. Over all I feel lucky. My progression has been slow.

Why me? It could have been multiple factors. Parkinson’s disease may result from exposure to an environmental toxin or injury. Maybe it was the speed I took to lose weight in my 20’s. Maybe it was the rural area I lived in, well water I drank, exposure to pesticides when I detasseled corn as a kid. Could be hereditary. Thirteen genes are associated with Parkinson’s and can cause the disease in a small number of families. In these families, genes involve proteins that play a role in dopamine cell functions. My Mother had Parkinson’s.

So there is no cure and it is progressive so give up right? Wrong! I’m not giving up without a fight. I’m trying it all; drug therapy,physical therapy. acupuncture, nutrition therapy,exercise, calorie reduction, transcendental meditation, prayer, brain path repair visualization, magnetic therapy and anything else that someone thinks of. My Doctor asked me to think about DBS when the drugs start to lose efficacy or the side effects worsen.

Like all Parkies I hope for a cure but until then it’s up to me.