Recently we experienced a series of events and life changes NOT recommended when you have Parkinson's! Jamey's symptoms were really put to the test, and I fear they scored a low D! But we are hoping he can re-test when this is all over, and get higher marks. LOL
Read on, and heed this advice. It could some day save your life! (or at the very least, ready you for an unexpected increase in symptoms).
It started in September, when chief care-partner and wife (me), broke her back. And I can tell you from experience, the emergency room in a hospital is not the place you want to be in the middle of a Pandemic (close to 6 hours and I never got a bed or a med)! Apparently, that wasn't enough for the mean-hoofed man-beast with the pitchfork. In the midst of this Covid crisis, we were unable to get adequate help for Jamey (in place of me), because so many caregivers were not working. So we called on friends and neighbors, many of whom feared unknowingly exposing us to a far more deadly disease. So help was sporadic at best.
To top that off, we had been told an apartment we'd been waiting for in a retirement community, had just opened up and we needed to move in the next few weeks if we wanted that floor plan (which we did). Yikes! In the midst of this pandemic, we had to sell the house, purge lots of "stuff" (we went from 1700 square feet to a little over 900), pack boxes with a broken back and a guy in wheelchair, hire a mover, and make home repairs requested by the inspector. Stress? Just a little! Remember, we're in the middle of a Pandemic, so Goodwill and other charities are 'itchy' about accepting items (long waits and lots of rules), flea markets are not running, movers have hiked up their fees and yadda, yadda, yadda.
A nice surprise in all of this; our house went on the market, had steady interest, and sold in just 5 days! That was a lovely bright spot amidst an otherwise bleak couple of months.There were quite a few issues the inspector found (they don't miss a thing do they?) so I enlisted help from friends, as handymen had also cut their hours during the outbreak.
So, we got packed, got things repaired, found a mover who specializes in moving seniors, and were ready to go. The day of the move added to our stress. The three men who moved us were reckless with our possessions, used foul language and other than one young man, were fairly irresponsible. We ended up with many broken items, and two things actually never made it into our new home. Not sure where they ended up; probably on the highway somewhere, along with all of the single shoes and mattresses.
We were exhausted but we were in. The next day, I went back to the old place to clean, and found Jamey's computer and several other items, still there in what used to be his Man Cave. Good thing I went back (and no, those weren't the missing items)!
We were finally in the new place! Whew! That should have been the beginning of a beautiful friendship, right? Well, even though the new apartment is accessible, that doesn't mean it's all gonna be a breeze! Maneuvering around unpacked boxes and getting accustomed to a new place, all takes its toll on a PD sufferer. We tried to get it all unpacked and off the floor as quickly as we could, but I was limited because of the back brace and general pain fatigue, and Jamey was limited being in the chair. It took much longer than it normally would have, but, with help, we did get most of it done. Of course, I was thinking once that was done, the PD symptoms would go back to pre-move status. Right? Ha! "You just keep thinking, Butch. That's what your'e good at!"
So many things can throw PD into a spiral. In our case, it was a multitude of things. Poor Jamey wasn't sleeping more than a couple of hours each night, his shaking had increased, and his body stiffness and freezing gait was all but constant. There really wasn't anything I could do for him, but keep him calm and take as much off his mental plate as possible. Thankfully, once the stress is gone, the body does begin its slow healing process.
Obviously, we can't put life on hold because we have Parkinson's. But it's important to be aware that things may change when one is under stress. There will be periods of time where the disease will exhibit much greater symptoms and the need for assistance and rest will be greater than usual. The Pandemic is stressful enough, but add to that any other life events, and your Parkinson's indicators could be quite a bit worse. The key is to try and keep the household calm, and take the stress off the PD suffers as much as possible. Not always easy if the care-partner is also under pressure, but it's important to do what you can to keep the symptoms at bay as much as possible. Every life event impacts us; those will PD, even more so. You may have to buy additional medical aids to help with body movements, but it's all part of the process. Be willing to find aids that alleviate mobility disorders, and work to move the body along. Be patient and persistent!
It has been about five weeks now, and Jamey's symptoms are just beginning to get better. We're still working on recovery from the consequences of this big move, but it's getting better every day. He will likely never function as well as he did before all of this, but we know this move was the right thing for us both. My back took much longer to heal (in fact, the break got bigger before it started healing) because I had to continue to lift him and assist in transfers, but is it getting stronger every day. There is light at the end of the tunnel, and as always with any disease, we're keeping the hope alive for a cure! Always hold to hope. It is what will get you through any crisis. Because, we are all part of a big working machine and we don't want our world to get so small that we miss the bigger picture! You'll have black holes; sometimes you'll climb right out, other times, you'll be in there awhile, but you'll always have the great creator in there with you, so take heart!
If you haven't already signed up for PANC Conference this year, please do so. It's Saturday, October 24 and it's virtual so no need to go anywhere. The nice thing about it being virtual is that you can visit in and out all day long from the comfort of your own home. Sign up at https://www.panctoday.org/2020-annual-conference.html.
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