“He’s determined, KC.”
“What’s determined, mommy?”
“It’s when you do something no matter what.”
“Daddy, are you intermed?”
He cracks a smile.
“Yes KC, he’s determined, and that’s why we love him so much.”
Life was much different for the first few years after @lifeaseric’s diagnosis. He went through his own battles as I’m sure most people diagnosed with Young Onset Parkinson’s do, and I coped silently as I helped him through symptoms that only I saw him experience behind our closed doors and even helped him hide it from the outside world when we went out. I spent a lot of time in online Parkinson’s chat rooms with hope to simply learn more about it, how to deal with it, and how to help him through it. I quickly learned that I was either a person with PD (Parkinson’s) or I was a caregiver. I guess that made me a caregiver, but it felt weird calling myself that because he was either younger than most of those with PD in the chat rooms, or than the husband’s/wive’s with PD of those in the chat rooms and he definitely didn’t need a caregiver. I didn’t feel like I could connect with anyone because @lifeaseric’s symptoms were so drastically different from everyone else’s, and I was just a girlfriend/partner, not necessarily a caregiver. I must say that I did find one friend through a Yahoo email Parkinson’s group shortly after @lifeaseric’s diagnosis and I feel so lucky to call her my friend still today. She was living in New Zealand until recently, and we have met her and her husband who has PD a few times when they’ve traveled to San Francisco to visit his neurologist. And so today, I consider myself not a caregiver, but @lifeaseric’s partner and best friend as we live Life as Us, while doing what it takes to beat Parkinson’s Disease.
Maybe, just maybe, you’ll get a bigger glimpse into the obstacles and challenges we’ve endured through this uphill battle as time goes on. But for now, I will share with you the present. Life as us today. The stranger in our home will never go away completely, but he is controlled with the right mixture of medications. As the disease progresses, so will the mixture of medications change and change again. We’ve learned this and as a family, we’ve learned to adapt. I love @lifeaseric so much and will stand by his side forever and ever.
Last night was much like any other night. I didn’t have the car yesterday to go grocery shopping and so we decided to eat out. @lifeaseric read about a Brazilian steak house in the area and much to KC’s despise, that’s where we headed. As soon as she saw the little individual tongs at each of our seats she was smitten with the place. (Sure wish I was amused that easily!) She loaded up her plate at the buffet with some of her favorites, cucumbers, corn, hard boiled egg, and rice. Then came the server with a hunk of meat stabbed with a sword. Seriously. He held it up and asked each of us if we’d like a slice, then proceeded to slice a piece of cheesesteak as we grabbed it with our own tongs and placed it on our plate. Well, KC was all over this new idea and said “Yes, please” for each meat that came by our table. Her plate was heaping with chicken legs, chicken hearts, sausage, and various types of steak. (They may want to rethink the discounted $8 child price!) Let’s cross the table now and talk about @lifeaseric. He was undoubtably in heaven. As the rarest of rare meats were being offered to him plentifully, his eyes begun to roll back in his head and he looked so happy and relaxed. I’m guessing this love affair with meat is a normal man thing, right? It’s funny because he doesn’t eat a ton of red meat, but when he does crave it, he goes all out. The difference for a person with PD is that an excess of protein all at once is not necessarily a good thing.
Amino acids (from dietary protein) can interfere with the uptake of levodopa into the brain. @lifeaseric takes levodopa in the form of a med called Stalevo which helps manage his movement symptoms. Eating high-protein food (such as meat, fish, poultry and dairy products) may decrease the effectiveness of levodopa. It’s usually the timing of the protein intake, not its total quantity over the course of the day. In this case, it was a lot of protein at once and also at the end of his long work day. Generally he takes extra Stalevo meds prior to a protein-filled dinner like this one, and I heard him say something about that tonight.
As soon as I saw him space out a little, I realized how much protein he was eating and immediately thought about how in the world I’d help get him to the car when dinner was done. He hadn’t brought a cane, which I know he hates to use when he doesn’t have to, and I had KC to get to the car too. But things sure are easier now that she’s such a big and helpful 4 year old as opposed to carrying her in her carseat and trying to help @lifeaseric at the same time. And that look on his face of complete and utter happiness eating all that rare steak and chicken hearts was enough to make my heart melt. Ok, maybe I wouldn’t go that far, but he’s stubborn and I knew it meant more to him that the difficult walk to the car. So what does a good wife do? When he accepted more meat from the waiter carrying the meat sword, I cut it into bite size pieces for him so that I wouldn’t worry about him choking on it and sat back to watch him enjoy his little piece of paradise. Just to stab his meat with a fork and bring it to his lips looked challenging and took much longer than myself or someone else without PD, but his determination was clear and it was obvious he’d be leaving with a delicious meal in his full belly. He’d stop chewing every once in awhile and my heart would sink as usual as I questioned if he was choking or just falling asleep. I hope that my concerns don’t bother him. I’ve always tried to be less obvious about the thoughts running through my head and just to be there for him when he needs me. But I also think it helps him knowing that I’ve got his back and know more about him and how his PD affects him than anyone else in this world.
Now here’s the part that really gets me. KC, our 4 year old, looks over at daddy to see him struggling to open his wallet to pay for dinner. She says on her own accord, “Do you want me to help you unzip your wallet, daddy?” I’m seriously so blessed to have such a kind-hearted daughter and amazing husband by my side. She delicately unzipped his wallet still in his hands and then kindly offered him a candy the waiter had brought with the check. He didn’t want it, so she stuck it in his pocket “for tomorrow, daddy, when you’re feeling better.” Then she noticed he was struggling a little and helped pull his jacket up over his shoulders. The three of us stood up and walked, slowly, to the door, across the street, and to the car. I stayed on the lookout for cars in case they didn’t see us as we crossed the street slowly and KC and I helped keep him on his feet when he froze at the start of the sidewalk. I opened his and KC’s doors, assisted him as he sat and attempted to swing his legs into the front seat, then finished getting KC buckled in. Once we got home and he fell sound asleep, I couldn’t help but feeling like I’m the luckiest woman in the world. He works so hard to help support all of us, battles obstacles of things that most of us would take for granted on a daily basis, and makes it a priority to make me feel so loved by him. I love having the chance to open the car door for him on nights like those.
I do not know if he will let me post this, so if you are reading it, then it’s a huge step taken on his and my part. I’ve never shared my side with anyone, and hope that maybe I can continue to enlighten others who may be in a position like mine or are just curious and bring attention to this neurological disease we call Parkinson’s (PD) that still needs a cure. Please feel free to comment below or contact us directly at firstname.lastname@example.org if you are experiencing a story similar to ours or just have questions. – lifeasallison
April is Parkinson’s Awareness Month. Please Donate to Team Fox and help us reach our fundraising goal of $1,000. All funds raised through Team Fox go directly to the Michael J. Fox Fund to further its mission to accelerate the delivery of life-changing treatments, and ultimately a cure, to people with Parkinson’s disease. Thank you!