Routine and Facing Parkinson’s

In this post, you will hear both Karl’s (a person with Parkinson’s) and Angela’s (a carepartner) unique perspectives about routine and facing Parkinson’s disease.

From Karl:

Maintaining a routine has real benefit even though after a period, it may appear mundane. If the routine that you have established is working for you and you have a well-balanced regimen that is meeting your needs and is doctor approved there is obviously no need for tweaking. Be sure to stay challenged in your workout, your cognitive work, and whatever it is that brings you satisfaction and happiness.

If your routine is comfortable and your Parkinson’s is in check, you are in a good place and your routine is solid. Stay vigilant for small changes in your body, mind, and mood. Once you notice any change that does not fit your routine, it is an indicator to check in with your neurologist for suggestions. Remain malleable, because as Parkinson’s may reveal a new symptom, you must add to or alter your routine.

From Angela: 

As a carepartner, developing a routine can be a challenge. As many of you know, the ups and downs of the medications and Parkinson’s symptoms can change day by day, hour by hour, even minute by minute. Coping with this challenging environment can test even the most even-tempered caregiver!

In our relationship, I find the following tips go a long way to creating a way of life we both can live with:

Always be Communicating

Since I’m not the one living with Parkinson’s disease (PD), I find the best way to find out how Karl is doing is to ask. Since many of his symptoms of PD are not easily seen with my own eyes, asking questions about how he is feeling is the only way to figure out what’s going on. The answers he provides are layered. It’s not what he says but how he responds. Since facial masking cannot be an accurate outward representation of how he feels, I find myself relying on additional cues including listening to his voice, watching his eyes, and even evaluating his word choices.

Routine with Flexibility

There is a structure to each day but there’s a lot of flexibility built in. I’ll share an example: We usually take a walk each day around noon. If his medications are not working as well as they should or a dose was taken late, we will shift the time to accommodate his physical “on time”. Or we may even make the walk a shorter route and take multiple laps. I’ve also started asking him at a certain point in these walks for him to pick the next part of the route. This is to have him check in with himself to see what he feels his body can do. Once again, I’m not the one with Parkinson’s so evaluating medication on time has to be his responsibility.

Be Ready to Pivot

Although we all want to keep to our commitments, there are times when that is impossible. Always have a list of alternative approaches to your plans.

Here’s an example: You have plans to meet out of town friends for lunch but you and your loved one had a terrible night’s sleep. You both realize you just don’t have the energy to make it to lunch, but you want to see your friends. Some alternative plans might be: How about coffee at your house instead? Or have them stop by and order lunch in? Or just have them stop by and chat with you outside in the driveway or on patio/deck?

Don’t hesitate to tell your family or friends that you need an accommodation. It’s OK to be vulnerable and admit you need a pivot. In the long run, you will both feel better that you made the change.

Build in Change to Keep Interest

Routine can be great, but we can all agree it does get boring sometimes. Everyone should find a way to do something unexpected. Recently, Karl and I skipped work one day and took a road trip to the river. We cleared our calendar, made lunch, and drove to the Shenandoah River on a gorgeous day. It felt great to sit outside, watch the ducks and bluebirds and enjoy our lunch in a new location. Sure, it took effort, but it was worth it! I still remember how lovely it was to just relax, enjoy Karl’s company, and the gorgeous surroundings!

Making a Choice

Maybe your plans aren’t that elaborate but give some thought about doing something unexpected to liven up your routine. How about going outside? Visit a local park with lunch or coffee? Have a friend stop by for a chat?

Routine comes down to choices…how do you want to choose to live your day? If you both can communicate your needs and wishes, maybe you can agree on a way to live with routine and the ups and downs with Parkinson’s disease?