I love my apartment. It’s charming, but still functional. It’s quaint, but practical. I’ve clocked many DIY hours making my home into the perfect space that I could feel safe and comfortable in. I would find a problem area, such as having difficulty applying my makeup while standing in the bathroom. Then I would figure out a solution, like creating a vanity in my bedroom, complete with a mirror that lights up and magnifies your pores so much that you don’t want to show your face in public again. Problem solved!
The word “apartment” sounds so uncool, so I’ve elected to call it my studio, my loft, my palace or even my flat. Cheerio. It has the perfect touch of stylish décor, with the practicability of your grandparent’s home… but without the plastic runners and couch covers. Everything has a user-friendly feel, which makes my daily life with Parkinson’s just a little easier. So why is it that I am writing this blog surrounded by moving boxes?
I have always encouraged Parkies to use modifications when faced with challenges, but some feel as if they were giving in, or being defeated by their illness. A perfect example of this is the use of the handicap placard. I hear many stories of Parkies who although would benefit greatly by being able to park their car closer to the entrance of the mall (in which they have just spent hours tearing up) but choose not to. They feel that they’re “not that bad” or they don’t want to submit to needing extra help.
In the last year, it has progressively gotten more difficult for me to walk down a flight of stairs, but in no way did I want to move from my perfect flat. Here’s the catch… I live on the second floor. Everyday I walk up and down my concrete stairs multiple times… usually carrying groceries, or large amounts of Fro Yo. One day, I was taking the trash out, took my hand off the railing for a second and then lost my footing. Dropping the trash bag, I watch it roll down the concrete as I steady myself on the stairs. That was close.
The last month, it seemed as if everyone I bumped into, (poor choice of words) had a story about a Parkie falling. Whether it was about themselves or someone they knew, it all ended the same… broken bones, bruises, cuts, scrapes and even broken DBS wires. In all those stories, there was a modification that would have prevented those falls, such as walkers, canes, pull-up bars or railings. But even looking further into it, there are things that can be done to prevent falls. Anticipating your needs.
Sometimes we are just in the moment, we are single-focused on completing a task. It’s difficult to think ahead because all of our attention is on one thing. We don’t have time to think of the consequences of our actions. Take for example my friend Kevin, who was in a rush because his medication took longer to kick in that morning. As he got out of the shower, he slipped and fell while reaching for his towel. When I asked him about it he said, “It happened so quickly. I didn’t even have time to think. I knew my balance was getting worse, but I didn’t think I would fall in the shower.” I asked Kevin, “ Have you ever thought of putting up a grab bar in your bathroom to help you get out of the tub?” With a chuckle he responded, “ I’m not that old! It was just an off day”.
But Kevin got me thinking if we could all look ahead into the future at what modifications would be helpful for us and then implement them now, we could prevent injuries. We will be staying one step ahead of Parkinson’s.
Now I will lead by example, I’m anticipating my need of preventing falling down a flight of stairs and then finding a modification. I am moving from my 2nd floor perfect palace in the clouds, to a lower level room-with-no-view. Although I am not super excited about people strolling past my living room window and I believe that this move will help me stay safe. I don’t view this move as giving in to Parkinson’s. In fact I’m keeping it in check and not giving the diva disease a chance to get the upper hand.
On my very last day in my flat, all the furniture and boxes have been moved. After I’ve cleaned and vacuumed the entire place, I take one more glance back at my picture-perfect home, then slowly close and lock the door. I grab my vacuum and start to think of all the things I can do to make me new place a wonderful space to live in. I take my first step down. Maybe I can plant vines on the patio to give me some privacy. Another step. I should check out some new curtains for the windows. Then I feel my balance starting to go as I am shaking trying to recover. My first thought is sit down. So I sat back right on my tailbone. Ouch… but it could have been way worse. It was like the universe was reminding me that I had made the right decision. I had anticipated my needs.
Check out my new lower-level digs!
Hi Allison,
I have been living in a lower flat (A.K.A. Bachelor apartment), well before being diagnosed with PD (2014). I understand your privacy concern, but with the right type of curtains and how you arrange the space, you can easily forget about the passer-by’s. It is almost like living near an airport or train tracks, with the passing of time; which passes so quickly, you no loner hear the plains or the trains.
Another brilliant blog, I don’t know how you do it.
I love your apt. Sad to say but I am a women with pd. I have had it 23 years now. I wass diagnosed at 40yo. Your blog really great. I should have kept one step ahead of pd. Rbefore my progression I felt like I did. I had DBS Sept.2016. Priorbbto that 1 year prior had even attempted to do the jpeg with duopa pump. The dr had ruptured my bowel and I almost died. Became septic. Anyhow Im to the point of fallingX3 in past year. Thank god no injuries. I seen it coming but was in denial. Now im depressed and cannot seem to get out of it. Ive not been able to walk for the past year.My balance is gone. I havent excercised. Done pretty much nothing this past year. Its driving me crazy not walking. How do I get my balance back?
Well the first thing I would say is you need to get moving again! Any type of stretching or activity. I would recommend that you start physical therapy to work on regaining some of your balance back. Remember if you don’t use it, you’ll lose it. So find ways to safely challenge yourself. Good Luck!
Diagnosed for ten years now. In 2010, we had our “open” ranch style staircase replaced with a more conventional staircase. It was so I, and my grandchildren, wouldn’t slip through the stairs. The best “innovation” I asked for at that time, was really simple, but has proved its value over and over since then. When the new stairs went in, I asked the installer for two handrails. One on the left , and one on the right,. This easy, hardly noticeable, modification has “saved” me countless bruises.
I sold my beautiful oceanfront home and moved to a “lower level” apartment in my daughter’s house. Views of my granddaughters instead of the ocean. Priceless!
Your perfect flat reminds me of a third story apartment that I shared with two other students for two years while I was in college. It was a grand four story brick mansion that I described as “faded elegance”. I loved that place! It didn’t have a shower, or a bathroom sink, or a proper closet, but It had high ceilings, woodwork, a double door to the bedroom with a crystal doorknob, and lots of other charm. I imagined myself back in 1905 as one of the 10 children of the piano maker who built the house, looking out the bedroom window at the view of all of the other brick mansions imagining them all back at the height of their elegance. The grand entrance with all of the beautiful woodwork and stained glass windows was still intact, but the folding doors into what could have been been a grand front room were permanently shut. I am so glad I didn’t have Parkinson’s when I lived there! Solo grocery runs were made by bumping a wheeled grocery cart up three flights of stairs, hoping someone would come and help me carry it stretcher style. We were evicted just one month before grad, because the place was sold to an investor who was fixing up the place to restore some of the glory and add some modern comforts (like a bathroom sink). Our apartment had been sublet to a number of new roommates every time someone got married or graduated, so none of the 3 girls that I shared it with had their name on the lease anymore.
I wish I could write this much on my own blog sites, I find it so easy to write novel length comments on the sites of people I don’t even know. Your blog just reminded me of that old character home from 30 years ago.
I have grab bars in my shower now, but I still get stuck in the tub for hours when I go dystonic and can’t reach them. I have broken many bones from falls. The worst was when I got disoriented in the dark and fell backwards onto the metal frame of my electric bed – I cracked at least two back ribs.I found out that paramedics have a wheelchair that can navigate stairs! That wasn’t really any fun at all, it was still bumpy. I should stop now.
Your college apartment sounds beautiful! Thanks for sharing!
Happy pre-birthday to you. Last year when I went overnight for the first DBS surgery step a bunch of our friends from church did a handicapped home makeover for us in a day and a half of work. They replaced the porch and upgraded the steps to a better more handicap friendly steps. I had better hand rails that I could use to get into the house. They completely rebuilt our bathroom to make it fully handicapped accessible and changed the bedroom doors to a wider design so I could get a walker or wheelchair through the door easily. What a tremendous blessing
You have some pretty awesome Wolfpack!
I’m so happy and proud of you allison!! You saw a situation that could and probably become more treacherous and you made a decision. It was hard for you I know but you sucked it up and did it. GOOD FOR YOU!! I will come visit you in your new digs soon. Love you chickadee!!!
Thanks chickadee! Love you!
Good ideas. Maybe I’ll be installing a grab bar that looks like a towel rack when I come to celebrate your birthday. See you soon!
Can’t wait!
Great reminders!
How old are you? I am 36 and have been a parkie since I was 18. Within the last 6-8 years I went from walking and driving to wheeling around in a power wheelchair due to loss of balance.
I was dx. at age 32, but had symptoms at age 29. I am 39 now…. well at least for the next 3 weeks! Ha! Parkie at age 18?! Do you have any advice for us?
I Hope you’ll have a nice time in your new palace !!! Thanks for sharing your story and your energy!!! Véro
It’s taken a bit to get used to, but my new place is growing on me. Thanks for the comment!
I have checked with others who have fallen, and they don’t remember why or how. That said, I agree with your logic. I have 5 grab bars in my bathroom and only 2 of them look like grab bars. The modern diva knows how to make it all look good !
We need some pictures of those stylish grab bars!
Another practicle, useful and humorous article Perk. I’m facing a similar problem but it’s only the bedroom that’s up a flight of stairs. Ask your friend if he considers it giving in to nature when he uses an umbrella in the rain. We have not much more control over the weather than we do over our “Gift that keeps on giving.”
As for the handicapped parking, just use it when you need it. There is a difference between just running into the pharmacy for a bottle of pills and pushing a grocery cart to the back of a crowded parking lot.
Great advice about the weather! Thank you for your comment.
We are doing the same Allison. My husband “isn’t that bad” YET… but we are leaving the home we love and thought would be our “forever” home to build an accessible house, so that WHEN he needs it things are all ready for him. and also so that he can enjoy a new home now when he decides to, not when he HAS to have it. Best wishes in your new place.. !!!
That’s difficult Toni, but ultimately you’re keeping him safe. Now think of all the cool things you can do to spice up that new home!