I came across a Parkinson’s Foundation podcast on hospital safety recently and it brought out some interesting points. In the podcast, Edie Simpson, a retired neurology nurse talks about how hospital staff who have the best of intentions may not have the best understanding of the unique needs of someone with Parkinson’s Disease. Hospital staff, as well as staff who work in rehab or respite setting, may not speak the same language we do when it comes to PD. For example, telling admissions personnel that my husband takes Parkinson’s medication 6 times a day will probably put him on a pre-set schedule which may or may not fit his actual needs. If I instead tell them that my husband takes his PD pills at 7, 10, 1, 4, 7 and 11, his actual timeframe and the importance of it can be entered into their system.

This would lead into a discussion of his response to the medications he takes and on versus off periods. They will need to know what they can expect from my husband if his meds aren’t working properly. I need to tell them that when he misses his medication his muscles get stiff, he has more trouble communicating, his balance and tremors are worse. The left side of his face and body are more impacted which can mimic a stroke, we don’t want them rushing him to the ER or giving him other meds that might make things worse. It may be necessary to give them the list of medications that are contraindicated for people with PD to ensure this doesn’t happen.

Finally, I know how difficult it is for my husband to ask a stranger for help especially with the more delicate or personal tasks. It’s much easier for me to have an upfront conversation to explain areas where he will definitely need help and those where he may need assistance. I also need to share any tips or special accommodations we are using that he might need while he is away from home. They also need to know those areas where he is fully able to care for himself so they can know when to step back and let him be.

For more visit Episode 76: Practicing Hospital Safety | Parkinson’s Foundation on the Parkinson’s Foundation website to hear Edie Simpson, a retired neurology nurse from the Muhammad Ali Parkinson Center, describe how hospitals typically operate and explain why we must educate hospital staff to ensure the best care possible.

For a current list of medications that People with PD should not be taking visit https://www.apdaparkinson.org/wp-content/uploads/2018/05/APDA-Meds_to_Avoid.pdf.

My husband has this disease and the only thing that helps slow the progression is to exercise. Why should I have to exercise too? Because even if I don’t have a specific diagnosis, aging is going to take a toll and the best tool to fight muscle loss and brain fog is, you guessed it, exercise. I need to be active as much as he does if I want to have a good quality of life when I am older.

I like to couch surf as much as anyone else and wish I could say that I am making this up but I am not. Check out this webpage on the National Institute on Aging called Real-Life Benefits of Exercise and Physical Activity. Here they clearly define the advantages of working out and share videos that talk about the 4 types of exercise I should be doing and why. There is another video that addresses the benefits I can get for my mental health from being more active.

I often stress that I need to stay healthy so I can take care of my husband but the reality is that I need to stay healthy so that I will be able to take care of me. I expect him to do everything he can to fight his disease but am I doing everything I can to combat aging? I want to live independently as I age and the key to being able to make that choice is in my hands now. I need to commit to exercising either with my husband as his PD coach or on my own. I think of the saying “use it or lose it.” I certainly don’t want to lose it so I think I’ll start using it more now so I will have it to use later.

I can build it, but that doesn’t mean he will use it. We had a lovely barrier-free shower with grab bars installed in one of our bathrooms. My husband tried it once and decided he doesn’t like it. He prefers the old shower in our master bath.

Take advantage of help when it is available. After years of doing all our yard work myself I finally hired someone to help me. It has lifted a burden and has the added benefit that I am supporting a local business.

Be open to new ideas when seeking solutions for challenges I face. We needed a new toilet and the model at the store had a bidet toilet seat installed. I had never considered a bidet for our personal hygiene needs. After seeing how it worked, I bought one and we both use it daily.

Plan carefully for travel but be ready for plans to be disrupted at any time. We flew to Hawaii in September. I had scheduled flights that fit our needs perfectly, the airline changed them. I had spoken with a hotel representative prior to our trip and thought I had covered all issues, the room was great, the bathroom was not. We made it work.

Know when to “lean into” something and when to “lean on“ someone else. Leaning into something is defined loosely by urbandictionary.com as owning a challenge, accepting the task and then doing it with confidence. I need to remember that I have a people both in and out of the PD network who are here for me. I don’t have to lean into everything, I can choose to lean on others in difficult times.

Live each day with gratitude for what I have not regret for what I have lost. I will celebrate what is going well with the understanding there will be loss along the way. Grief is a natural part of the caring process but wallowing in sorrow wastes my energy and I don’t have that much to spare.

Life is short. Hold the ones you love tight and make sure they know you care. Need I say more?

I’m having a blue day today. It doesn’t happen often, but I just feel tired and apathetic. I don’t want to do anything and yet I am surrounded by things I need to do. So, I am going to pick a project that is outdoors. Yes, it’s cold and wet but I won’t let that stop me. I will go outside and get some fresh air with the hope it will bring a fresh mindset because sitting here in the house looking at undone chores is not going to help.

There are some branches that came down in a recent wind storm. I will bundle up and tackle clearing them away. It shouldn’t take more than 30 minutes and will be a nice break from the things I do inside every day. It’s a physical task that should give me some needed exercise and should get some positive energy flowing. I can complete it quickly and see the results, a win for me. Plus, it will feel so good once I finish and can come inside for a hot cup of tea, another win.

The household chores will still be here waiting when I come back inside but I won’t let them overwhelm me. I know that they will get done at some point, they always do. For now, I am going to step outside (literally) of my regular routine and see if it won’t help me escape the blues, the blahs or whatever it is that is keeping me from enjoying today.

In case you’re wondering, I did go out and pick up the branches. It was so nice that I decided to rake up some leaves too. When I came back in, I was able to approach my inside chores with a new mindset and got most of those done too. It’s amazing what just a little change in routine can do for my mood!

I am writing this at the tail end of the holiday season, a time when I should be looking back at wonderful memories. Instead, I find I am feeling some disappointment and regret over things that didn’t happen rather than celebrating what did. I am stuck in the “what we used to do” syndrome and can’t truly appreciate the wonderful things we do now. Some of it can be attributed to my husband’s diagnosis, more of it to the simple passage of time. When my unrealistic expectations don’t match reality, I find myself left with regrets and disappointment.

How does all of this relate to my life as a CarePartner? It is important that I let go of negative feelings like disappointment in order to be fully here for my husband. But, it is also important for me personally outside the world of PD. Granted there are days when things are not as good as I might hope, but being disappointed is not helping anyone. I need to remember that everyone has struggles. There is value in accepting and appreciating each day for whatever it brings. When I want something specific to happen, I need to be open with those around me. I need to let them know what I expect so they can help me achieve it.

If I analyze my expectations and let go of those that are not useful, like those I was holding around the holidays, then I can start to enjoy what each day has to offer. Using the perspective of what is good about what we are doing right now versus what else we could be doing, will help me connect with my own sense of peace. Just as our lives change, our celebrations will change. It is inevitable and it is okay as long as I am able to understand, ask for what I need and be open to adapting along the way.

“My diagnosis occurred about eight years ago.  This was after two plus years of misdiagnosis of my symptoms as essential tremor.  The first challenge was to learn more about PD, it’s causes, my short- and longer-term prognosis, potential mitigating interventions that were available, and efforts that are being made to improve treatments and ultimately a cure. 

The first decision I had to make was who would be in control of my situation: me or PD. I chose to be in control with accommodations when needed to adapt to the issues created by PD.  While my medical team was a good source of “scientific” information, the ” real life” came from my own research on the internet at sites like Michael J. Fox and the Parkinson Foundation.  This was augmented by networking with local PD organizations such as Parkinson’s Resources of Oregon.” 

I am grateful every day that my husband has adopted this positive can-do attitude. We don’t know where this journey will lead, but we are doing our best to find our way through. By focusing on what we can do rather than what we can’t, we are still able to live fully. Life can be good as long as we remain strong and remember that we need to define PD, not let it define us.

It hit us the week before Christmas in December of 2008. Cold weather moved in from the north and brought snow with it…lots of snow. My husband and I had tickets for a Madrigal feast at Skamania Lodge, 40 miles away, with plans to stay the night. We got up that morning to find the ground covered and snow coming down heavily.

Facing weather reports of blizzard conditions, we bundled up and headed out anyway. Halfway there, I was suggesting that we turn around but it wasn’t an option. We followed a semi which helped clear the way ahead as the roads were closing behind us.

Arriving at the lodge, we were assured that the program would continue regardless of the weather since the players were from the local area. The lodge was decorated beautifully, and we decided to settle back and enjoy our one-night stay.

The program was wonderful and as we went back to our room, we scarcely noticed that it was still snowing. Weather reports predicted the storm would clear off the next day and even though we knew the roads were closed, we weren’t worried. It would all be done by morning.

The next day dawned with snow still falling heavily. By lunchtime, when it hadn’t let up, we began to be concerned. Members of the hotel staff were working frantically to keep steps and driveways clear, but there was nowhere for us to go anyway. We sat by the fireplace with other travelers and discussed our options which were few.

The road was clear to the east; we could go that way with the hope that we would be able to circle back somewhere and head west to our home. There was no guarantee that route would be open when we got there. Our only other option was to stay put and wait out the storm. We had four-wheel drive and chains and would be able to get through once they opened the roads. And, we had to acknowledge that there definitely were worse places to be stranded as we watched the reports of travelers stuck at the airport and the train station. All in all, we weren’t in too bad a place.

We bought swimming suits and tried out their pool and hot tub. My husband’s hair froze when we went for a soak outdoors. For two days, we walked the halls of the hotel and took dozens of pictures of the snow. We visited with hotel staff who had set up a Wii system in one of the meeting rooms to pass the time. We found the lodge’s library and read old Reader’s Digest condensed books between naps. We watched the weather reports anxiously waiting for the “all clear”.

We were in our room that afternoon having exhausted the library, the pool, and the resort menu when we heard that State Route 14 was opening briefly. We had already extended our stay for the next night, but the hotel staff was as excited as we were to see us leave. We drove back to Vancouver slowly and carefully arriving back in town just as we heard that they once again closed the roads. Needless to say, we no longer wish for a “white Christmas.”

Changes in routines are tough for both me and my husband. His symptoms are best controlled when he keeps to a set schedule of meals, meds and rest. Holiday events can disrupt this. Today is a great example, we are going to dinner at my sister’s house. To accommodate the changes in schedule, my husband will be taking his medication on a slightly modified schedule. The drive is short, only about 30 minutes, he may need to stretch out a bit when we get there to loosen muscles that stiffen up when sitting in a car.

Once we get there, he will be faced with additional trials. A different environment to navigate through can impact his balance and gait which may lead to a fall. There will be more people around which means busier conversations challenging his communication skills. He will have different choices about what to eat. Changes in diets, things like too many holiday treats, can interfere with his digestive system.  All of these factors create stress which impacts how effective his medication and even his DBS are when attempting to control his tremors. He will be exhausted when we get home which may even carry over for a day. We have nothing planned for tomorrow so he can rest as needed.

I think that it is important to maintain connections with our family and am looking forward to today’s gathering. I feel that we have discussed the challenges and will be ready for whatever happens. The rest of our holiday activities will be at our house and even more lowkey. We can’t give up everything, instead we will plan mindfully and enjoy the holidays to the best of our abilities without overwhelming either of us.

For more info check out Ask the MD: The Holidays and Parkinson’s | Parkinson’s Disease (michaeljfox.org).

I think it’s time to create a honey-do list for myself. I will post it on the refrigerator and look at it every day. I’ll make it in a format that allows me to add things as they come up and take things off as I finish them. Listing all that I do and all that still needs to be done should alleviate the challenge of trying to keep track of it all in my head. Seeing it all in front of me would allow me to prioritize tasks and make sure the things that matter most happen first.

I often put off doing things not because of procrastination as much as time limits. If I have 10 minutes free, I will try to get several little things done which leaves the bigger projects hanging. Finding open windows of time for the bigger things takes planning, and that doesn’t necessarily work when you are a CarePartner. I think that if I could have just 2 hours once a week to get those big things done, then I could let them go. Instead I get lots of things started and few finished.

The top of my honey-do list for today is to buy a white board that I can use for tasks. I will find a place to hang it and update it regularly. It will remind me of what I am accomplishing as well as what still needs to be done. Hopefully, it will lessen my anxiety as I work through the list or not as time allows.

It’s 12:30 am and the kitchen is calling, “Come join me. Your husband’s safely asleep, it’s just you and me. I’ve got some lovely almond milk you can enjoy alongside a piece of toast or fruit. Come on out, it’s time for just you.” Okay, my kitchen may not actually speak to me, but the peace of the night certainly does.

I used to be bothered by what I thought was insomnia before I realized that it is an opportunity. There is a time in the middle of the night when I can let go of everything. The house is all mine, I can enjoy it without worry or stress. I may have a light snack, read a few chapters in a book or sometimes I write. Whatever I do, it is all about me. I am not up every night, maybe once or twice a week, but it is enough.

To a non-CarePartner this may not make much sense. During the daylight hours, when my husband is awake, I am on constant alert. I live in a state of “what if” staying close and listening to make sure all is well. In the midnight hours, I can relax knowing that he is safe in bed which gives me a sense of freedom. These times are my midnight moments, times I have learned to treasure rather than fight. A bit of unexpected “me time” that I share with only my cat. I’ll take it.