One of the most accurate descriptions of how it feels to live with Parkinson’s Disease was made by Michael J. Fox. “It’s like having a 4-year-old climbing on you all the time,” describes Fox, “and so whatever you’re trying to do, you’ve got this 4-year-old and you’re … just trying to be patient and focus on what you need to do.”
I use his picture of it all the time when people ask since most have had a squirming toddler climb on us at one point. Now, imagine having the child on you 24 hours a day and when you are brushing your teeth, taking a sip of coffee, eating, walking down the street to your car, going to the bathroom, driving, reaching down to pick something up, tying your shoe, or even trying to hold a real child while the unruly imaginary PD child is constantly crawling and climbing all over you.
This post is about holding that real child…AND picking up that child, changing that child, feeding that child, bounce soothing that child, or simply playing with that child. You see within about six weeks a new baby boy will be added to our line up. Not Alli or I’s first rodeo, but six years now into my PD diagnosis the imaginary child on top of me has become much more active which causes a little concern about how I will safely help with the baby. During the day is rarely a problem. I may have one bad day out of ten, but my med levels are lowest at night and it’s really important to me (and for Alli’s sanity) that I can help sometimes in the wee small hours. In addition to being a good husband by helping change and soothe a baby at night, I know how precious moments can be in the deepest of the nights when it’s just you and the new baby. The rest of the world is dark, cold and silent, but nothing warms the heart more than two bright eyes looking up at you as that baby snuggles his little head into your chest. I don’t want anything to take that away from me.
However, we are realistic and want everyone safe. So as we approach the babe’s arrival we began to think of ways we could design the nursery and house to accommodate my symptoms even at their worst. We’d like to share that process with you and especially others that have challenges caused by Parkinson’s and other diseases. Our series of posts will document our challenges, solutions, trials, success and even failures. But already in our early stages of design and planning we are SO excited about doing this! We have several companies that have agreed to help us in this endeavor and we will share the commitments these amazing companies have made throughout the series. Let’s just say we have been humbled and blown away by the generosity and willingness to help.
The first company that stepped forward and is leading the design of the nursery and shared room with our daughter KC is The Land of Nod. We have another phone conference with their design services specialist tomorrow to finalize the incredible design she has come up with for what is the perfect combination of style and functionality for our specific challenges. In the next post in this series we will share the design we have chosen and introduce you to this company and the professionals that accepted our partnership in this journey.
Here are the specific challenges we have presented the companies helping us:
Furniture that is easy to access and lower profile to allow for balance issues.
Furniture that is easy to open and close when dexterity is compromised.
Room layout that allows for shuffling and freezing gait. No trip hazards.
Safety of baby on changing table.
Easy access to changing supplies.
Options to hold and soothe baby when Dad can’t safely.
Safe bathing options.
Higher profile strollers and high chairs to minimize how much Dad has to bend over and compromise center of balance.
Equipment that is easier to open and close.
Oh…and did I mention the new challenge of KC and the baby SHARING a room since we are in the middle of moving to a two bedroom flat in San Francisco? (More on that later…not sure Alli wanted me to spill those beans yet!)
Anyway…let’s do this. Baby countdown is on and much to do. Meet me at the next post!
-life as eric