The high cost of living well with Parkinson’s

As I was inserting my credit card to pay the $668 co-pay for 30 days of my Parkinson’s medication, I thought about how Michael J Fox had said that the average Parkinson’s patient spends an average of $16,000 out of pocket on their healthcare each year. The entire pharmacy staff scrambled to find me any kind of coupon that would lower that amount, but no luck. That number seems high, but then I mentally calculated how much I spend, and how quickly that number can rise, and I see the urgent need for us to speak up.

Exercise is essential for people with Parkinson’s. For some, exercise is so effective that they consider it to be  like just another medicine. You don’t miss a dose! With health club costs so high, many are faced with a choice: find a full-service health club and hope they have all the classes you’ll need, or pay high drop-in fees. The typical drop-in for a yoga or spin class, for example, can be from $15-25 – while annual membership dues average $100.

 Not everyone is lucky enough to live in a city like Denver, where PAR (Parkinson’s Association of the Rockies) underwrites many classes, so the cost to us participants is free.  It used to be $10 a class. Considering that many people with Parkinson’s attend multiple classes every week, this can become very expensive. For instance, Mondays I dance, Tuesdays I take QiGong in the morning and PWR! class in the afternoon. Wednesdays and Saturdays I go boxing at the Power Punch class offered for free by  PAR. Thursday is my day off, and Fridays I take another PWR! class. At $10 a class, I spend $40 a week for dance, QiGong and the Friday PWR! class . Add in the Peloton app at $12 a month, and the online subscription to Qigong, and I’m spending $135 per month.

Many don’t have the dizzying array of options that I have, and that’s a good thing.  Parkie’s are the definition of “paralysis by analysis.” By the time I decide on which of the 3 classes to take, it’s too late to make it on time to any of them. 

I also see a Functional Medicine Doctor, which averages $150 every 2-3- months. Then there are acupuncturists, physical therapists, massage therapists, and chiropractors to consider. Our budget has become so tight, with me not working, that we had to give up our monthly house cleaning service. Our house is so filthy, because I am unable to keep up on my own, that I won’t let them come for the occasional deep-clean, either. 

The cheap knock-off running shoes I’ve been buying hurt my feet. I’ve come to the realization that I have to invest in a good pair of shoes, the kind you buy from a running store that puts you on a treadmill so that they can analyze your gait. Then there are various supplements, probiotics, essential oils and  high CBD oil. 

And I try to eat organic foods, in order to limit my exposure to toxins. Organic foods are expensive!

Add in my $4,000 insurance deductible, and I’m right within range. So it’s not such an unbelievable number, after all. When you consider disability payments are sometimes the only income people have, Parkinson’s can quickly become a very expensive thing to have.



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