Hidden Figures

When Jamey was first diagnosed with Parkinson's, our immediate concern, of course, was how this would change our lives. The day to day functioning, movement, and overall quality of life was on our minds. However, one aspect of the disease we didn't actually consider, was the overall financial burden. Of course we knew we would have more doctor appointments--that was a given--but we didn't think of all of the hidden costs that we would incur.

At the beginning, it wasn't too bad, but as the disease progresses, all kinds of issues crop up. Issues we never thought about.

Medication - The more years we have with PD, the more medication is required to keep his body in check, to keep it functioning, to allow him some amount of control.

Battery changes - This only relates to those who have had Deep Brain Stimulation surgery. It only occurs about every 3 years, but it can be costly. Last time we had a rechargeable battery put in to give us more time. However, 9 years goes by very quickly and our time is just about up again!

Botox - Yes, Botox! Dyskinesia is so strong at times, it clamps his eye shut and causes pain to his face. So every 3 months we get Botox on that side of his face, to help him function better. It really works, but of course, it's pricey!

Chiropractor and PT - It's a continual process to keep his posture upright. Sometimes he is so severely tilted to one side, that his neck causes horrible pain!

Dental Care - It is now necessary for Jamey to get a cleaning every 3 months because he is not able to brush his teeth properly on his own (even with an electric toothbrush). A deep cleaning is necessary (and often painful) to keep his hygiene in check. In addition to the cleanings, he must take premeds before each one, to prevent infection to the brain (this is only because he had the DBS surgery).

Extra Caregivers - I was able to do all of this myself for almost 20 years, but now I cannot do it all any longer (the stroke didn't help). We've had to hire more caregivers and we're at the top of the care schedule, which means we pay the most per hour because of the care needed. This also has its own set of issues. If we go through an agency, they take care of all the taxes and legal end of things. But, if I hire an independent (half the price), I have to have them fill out a W-9 and at the end of the year send them a 1099. If I pay them more than $2,000, I have to take out taxes myself and make sure I am legally on course. It's a great deal of work for the average sod!

Medical Equipment - This includes a patient lift (to help get him up from a lying or sitting position), a van to accommodate his wheelchair, various lifting, dressing, and moving assists, safety bars for walls and toilets, and several kinds of wheelchairs. Fun stuff!

Diapers - This is an added item now that we're in our 20th year with the disease. What is most difficult, is finding the right one that works at the right time. Because the disease changes constantly, what works one week my not work the next. So, we spend a good deal of money trying to find what works for him at a given time, and we have a lot of left overs that don't work at all. I keep all the "didn't work" items because at some point they may work for him. Hmmm, maybe we'll have to add storage unit to this list one day! LOL

Toenail Cutting - He can no longer cut his own toenails. I was able to do it for awhile, but now it's just too difficult for me. I don't want to risk cutting his skin! So we will have a Podiatrist do it for us, once I can find one nearby.

Eating Utensils - A special set of eating utensils is very helpful to Jamey. I purchased 2 sets and it was close to $200 (see "Helps" at side margin), but it has allowed him to continue to eat on his own without help. So worth it!

This is not an exhaustive list. Each person will have their own experience and each person's body will respond differently to the disease. There may be things we haven't had to deal with (swallowing issues for instance) that you may have. I know it looks daunting, but remember, this is after many years with the disease. I just want to point out things you might not think of, so you can be saving for them right  now. If you have good medical insurance, that's a plus! Medicare used to pay for many of these items, but they no longer do. I hope that will change back at some point.

The most important advice I can give you through all of this, is to enjoy every minute you have with each other. Whether you are a husband, wife, parent, sibling, or a friend. Every minute you have with each other, even if it's spent caring for them, is precious! Don't let the financial end of things discourage you to the point of depression. Remember, the most important thing is that you have this loved one for another day!