When I came home from a particularly stressful and exhausting semester, I was excited for what every college student returning home dreams of: sleeping in past noon and lazy days spent entirely in pajamas. After a long day of travel and finally crawling in my Rhode Island bed, I can’t describe how good it felt to fall asleep without having to set an alarm for the next morning.
I woke up a little past noon and wandered downstairs in my pajamas. My drowsiness mingled with excitement about browsing a fully stocked fridge and pantry, a luxury surely taken for granted in college. I barely turned the corner into the kitchen before I realized we had a full house. There were half a dozen construction guys right out the front door, two physical therapists working on dad in his room, a nurse’s aid cleaning up the kitchen, a couple of neighbors chatting with mom in the mudroom, and dogs sprinting around barking at all the madness. I quickly realized this wasn’t going to be the relaxing and uneventful vacation I had hoped for.
Our front door might as well be replaced with a revolving door, because there is a steady stream of people coming in and out every single day. In comes food, help, beer, tears, and laughter, which we are so appreciative of. But ALS weakens the muscles, including all of those required to talk. Dad’s speech has declined a significant amount, and with so many people in the house every day he exhausts those muscles trying his best to chat. We really want to focus on the quality of visits now rather than the quantity, and this works best if they’re planned ahead of time rather than just dropping by.
Shooting a text to my mom is best, because most of the time when the phone rings she has to drop everything she’s doing to run and grab it. If she responds and gives you the thumbs up, you caught us at a good time! If she’s unable to respond or gives a thumbs down, it’s probably because her hands are busy preparing meals, feeding dad, taking care of the dogs, trying to find the right TV shows, organizing doctors visits, and the billion other things she does a day. Drop in visits are really great most of the time, because we love our friends and our neighbors dearly and you all help us so much (and you usually come with a bottle of booze!). But there are times when dad is in severe pain, the emotional and stress levels are off the charts, tears are flowing, or naps are just trying to be taken. We’ve become pretty damn good at pulling it together when people come through the door, but I assure you your visit will be much better if you just let us know ahead of time! Dad also mentions his pain in his post, and this is definitely something to be aware of when you do visit. His shoulders are extremely sensitive, so when you come to see him avoid touching that area and he (and us too) will be very thankful for it.
More than my parents will let on, things are insanely busy and INSANELY stressful at home. As much as we try to be positive, things are really hard. Christmastime was particularly emotional, and day to day struggles and bumps can be extremely disheartening. The mental and emotional toll this disease takes can be just as debilitating as the physical. Dad is often in a lot of pain, and mom is essentially trying to be the hands and legs of two people. To be quite honest, I’m not sure how she is still standing. Whenever dad needs her, she’s there. This includes any hour of the night, and pretty much every minute of the day. She is by far the strongest, most tough skinned yet compassionate person I know, and has earned several lifetimes worth of karma. I am so proud of her and consider my brother, my dad, and myself so incredibly lucky to have her to keep things going.
We love seeing everyone and the outpour of care and love we’ve received from people all over town and the country continues to be amazing. If you haven’t seen it yet, check out the #41 jersey page on the blog, where dad’s Air Force teammates have been passing around the 41 jersey and sending along their words of encouragement.
Ok, now here is dad’s post. It took him three days to write this using his eyesight technology. Every single letter, space, and period had to be carefully picked out with precise eye movement and endless patience, so these words are incredibly significant. We’re still trying to figure out how to get texting on his tablet, so for now, please email him whenever you want to chat!
Thank you guys for everything!
Sorry it has been so long since our last blog entry, but time is a precious commodity to the Palko family and unfortunately writing blog posts has become a victim to that time. We are definitely alive and well! We thoroughly enjoyed the holidays spending time with Kyle and Gabby. Many have been asking and want to know how I am doing, so here´s an update.
Last week, I had my 6 month post-operation testing. I tested relatively well. Although the surgery set me back a fair bit, I have remained pretty stable for the last 7 months. My legs are about all I have left. Lifted out of my chair and with a bit of support, I can stand for a couple minutes. Although I can move my legs and ride a recumbent bike, I am unable to walk on my own anymore, as my upper body remains too weak to support a walker now.
My breathing capacity remains incredibly strong. Last week, I tested/blew in the 93% range for healthy people in my age bracket! This is good news, as failure of breathing function is the main cause of death for most people with ALS. Most notably, the main goal of my stem cell transplant was to preserve my breathing. For now, that aspect seems to be working.
However, pain has been a persistent problem, primarily in my left shoulder. This pain has been narrowed down to a pinched nerve at C7 in the neck. There has been so much muscle mass lost in my shoulders that they are literally coming out of the sockets. This has been adding to the pain problem. I have been going to the Brigham/MGH rehab facility in Foxboro, MA once or twice a week. Given the fact that the facility looks right into Gillette stadium and that I can pretend that I’m practicing with the Patriots on any given day, I’m very happy with the therapy that I’m receiving there. We have been primarily focusing on the neck pain in therapy.
Construction has finally started on the new addition to our house, so we are both happy to finally get that going. I’m excited to finally get into a private bedroom again and a bathroom that accommodates my wheelchair. It has been trying times as I’ve been sleeping in the living room and showering in the powder room shower.
Overall we are doing okay. As my wife and daughter tell me, I can be cranky and ornery at times. I can be a tough customer, at times. Living with and caregiving for ALS is not easy or fun, but we are trying our damndest to make every day count. We are so very fortunate to have a fantastic support system of friends and family looking after our every need. Without you guys, we would really be up a creek and every day would be far more difficult to count as a good one…
Thank you for all your support, and Happy New Year!
Kreg and Elizabeth