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Juggling Parkinson’s: Health Updates, Culinary Ventures, and Household Responsibilities

So, you might wonder if I have been and what’s going wrong. Well, let me tell you a little story.

Medical updates

This month has been a month of medical appointments. I have a lot of medical appointments, and that’s putting my priorities elsewhere, but only for a bit of time. See, this is the month where I’ve had to deal with more speech issues, an MRI, issues with my right hand, and problems with joints in the right hand. Two group appointments with speech pathology. It is important to remember that as Parkinson’s continues to impact movement, it also softens the volume and distinctness of my voice. Then, on the day of dermatology appointments, I checked on the chunk they took out of my left facial cheek. The biopsy came back with noncancerous carcinoma. However, several spots had to be frozen and will be monitored. I was given a new prescription to add to my regimen. Then, I’m meeting with the surgeons to look at the issues with the left hand. I’m sorry, the right hand will be up soon after that talk with the podiatry. I have some problems with my feet, so it’s full of medically-related things happening; it’s just how things are. See, Parkinson’s continues to let me know just when I think things are the same change. Never would I have envisioned that Parkinson’s would be so interwoven into life, my life. It will not stop me. It will never define me.

Culinary adventures

In the meantime, I’ve found a couple of exciting recipes. A cherry almond bread, banana bread, zucchini bread, but this time with fresh, dark cherries and toasted almonds. Cedar plank smoked salmon with a ginger sesame glaze served with a fresh cucumber dill salad. It’s pretty good stuff if I do say so myself. I think I probably put up about five batches of pickles so far. My cucumber vines have produced more this year than any other year. I’ve lived here. I’ve done some fermented pickles, some called cucumber slices, with more of a cross between an excellent kosher deal and a crisp dill. I have at least maybe one or two more batches to go. Check this morning; the cucumber vines have at least another batch waiting. The church ice cream social will be this month, requiring a batch from the ice cream maker. Wonder what fruits will be fresh and available next week. Culinary adventures have always been ways for me to focus on something other than Parkinson’s disease.

Conversely, tomatoes are very plentiful, nice-sized, and green. Not a red tomato insight yet. So when those change color, I will be processing a lot of tomatoes; I see I’ll have a lot of tomato sauce for at least a year or so. The hot peppers are probably the most interesting. The ghost peppers are plentiful green, maybe 2 inches long. That will be some hot stuff!

Around the house

In addition to medicine or medical activities and garden activities, there are the wonderful continuing activities of home ownership. I realized I could not mow the grass anymore; someone was cutting the grass for me now. Several other tasks around the house need to be completed, some of which I need to finish and some of which I need to find someone to do. My to-do list grows. My it’s done list needs to be growing. People to make that happen are seemingly overbooked or unavailable it seems. With tenacious persistance this will occur. With that going on in my life, I hope you understand why I’ve been absent. Things will get better soon. And I’ll have time to get back to what I started. I am sharing a story with you and connecting with you as well.

Three simple things

Have you ever stopped to recall some of things you have heard over your lifetime? Think about all of the commencements you’ve attended; from junior-high to senior high, perhaps college, and others. What made that memorable to the point where you can recall the points of the speaker, even after years have passed?

Three points to ponder

The Honorable Loretta H Rush, Chief Justice of the State of Indiana, delivered a very memorable keynote at the IU Maurer School of Law Commencement today. Key points and takeaway: Shake it up, Show up, and Speak up. Shake it up – be bold, challenge the norm, be brave. Show up – sometimes, the greatest opportunity we are presented with is to simply show up, be present, be THERE. Speak up – never let an opportunity pass you by to speak up. So, shake it up – be the difference … show up, be intentional, be deliberate, be engaged … and speak up … for those with no voice, for those who need YOUR voice. Thanks to the Chief Justice, for her challenge to action! – David Peter, May 6, 2017.

Show up

I have and make it a conscious and intentional act to be present. It has become part of who I am, to show up at the things important to me. When I was Dean of the Library at Vincennes University, I was fortunate to have a group of wonderfully talented librarians whose deep understanding of the value of reading and how that was at the core of their profession. The library would sponsor a celebration of banned books yearly, bringing attention to the importance of full access to books without any sort of filter. Students would sign up to read passages at a performance. Faculty and several administrators would come and participate as well. Community members would attend and several would participate as well. To appreciate the significance of the event, consider that in some places here in this country, and overseas, such gatherings would be labelled as acts of disobedience. And, when the content that is being read is added, some might label it is inappropriate or worse! But here these individuals were, present at this event.

How can you show up?

Go to the events, the meetings, the presentations, the performances of those things you care about greatly. You don’t have to be showy or ostentatious, just be present.
If invited to attend, go there. Sometimes the invitation may have been made because your compassion is known, appreciated and acknowledged by someone.

Speak out

Speaking up is a skill or ability that can only be refined after time has given opportunity to speak, and speak and speak again. Practice is for me the most efficient way to become a better speaker. I will sometimes read memorable speeches from Lincoln, Rev. Dr. Martin L. King Jr., sermons of John Wesley, poetry from Amanda Gorman, Maya Angelou, following the words, the visual images formed into words, and the rhythm. Not seeking to be anyone but myself, I read to refine and focus my oratorical abilities.

How can you speak up?

Engage in a conversation, a dialogue if you will, with one person. Share ideas, concerns and questions.
The time may come, or may not, for a larger audience to hear your words. Speak with confidence, and speak with conviction.

Shake it up

Most of the people who know me in a range of settings, locations, and over periods of time would not say I am a protestor, not an agitator, not a disrupter; perhaps even more describe me as a non-violent sort of fellow. I just do not see myself as the one who would throw something, resort to violence; more than not, I am more of a non-violent protestor. Don’t get me wrong, I can write a letter advocating for something that lies at the core of who I am. If I shake things up, it is with the written word.

How to shake it up

I’m still working on this part myself. I’m just not quite sure how to be a more vocal and visible disruptor. It’s just not me.

Final things

Seven years later, here I am. These words continue to resonate with me. Three simple things. Nothing more and nothing less. In the midst of all the discord of the day, and yearning to find that balance needed, don’t three simple rules make all the sense?

Navigating Digital and Analog Communication in the Modern Age

Maintaining connections with people has become a challenge. Parkinson’s affects handwriting, making it difficult to write letters. Speech-to-text technology has improved communication. Technology has decreased postal correspondence, but digital and analog communication should coexist. Different occasions may call for different forms of communication. Integrating technology into friendships requires considering alternative means of contact.

Part 1

It seems, at least to me, that it is much more of a challenge to maintain and nurture connections with people. Not sure what’s going on, but here are a few thoughts.

The written word

As my handwriting continues to become a bit more illegible, I am not likely to write a full letter. Even with ruled pages, my script will not be on the line. Above, below, but never with anysort of predictability where it should be. So, it is not my most comfortable form of communicating. Tremors that are a part of Parkinson’s will often cause letters to be misshaped to the point of being unintelligible. And that’s even for me, the writer who cannot even read what he wrote. Just the way it is.

The advances in technology for speech-t0-text have been transformational for me. Learning how to add punctuation, “Period,” “Question mark,” “Comma,”Exclamation mark,” have made it easier to write something. This simple capability of technology has given me much more opportunity to communicate and connect without having to rely on pen and paper.

Old or new

I have observed over many, many years that as technology has become more ubiquitous, correspondence delivered by the post office has declined. Can a SMS be an adequate or equivalent form to a postcard? No. Can an email equate to a letter? Definitely not. Not wanting to categorize all technology as bad, let me propose that there must be some sort of balance between the digital communication and the analog communication. Consider that there are some instances, selected events, particular gatherings that are better served with digital, and some analog.

What determined that writing a thank you note, placed in an envelope, addressed and with the postal stamp was not necessary, even perhaps just a wrong thing? I can remember writing thank you notes for birthday gifts, holiday gifts and much more. To receive a thank you social media post, or sms text message isn’t a written one. Not to worry, I know that the mode that each one communicates in differs. And that’s alright with me. I am letting you understand more about my own disciplines.

For now

If you find yourself with a friend who have integrated technology rather than uses technology, ask “So, how can I get back with you if I have any questions?” Would a physical, mailing address work? A phone number (not the corded variety, more than likely a wireless or digital or mobile)?

The times are and have changed. The IoT is present.

Sleep

To begin, I have been living with a diagnosis of chronic obstructive sleep apnea (think those are the correct words) for a decade or so. Forgive me if I’ve used the wrong words or been more precise in the time, I have never been able to have a precise recall of any event. I use a CPAP machine. And now that the background has been conveyed – oh yes, I am also living through Parkinson’s disease – we can talk about my sleep pattern.

My evening routine is be in bed by 10:30 pm. At 10:00 pm I head to the bedroom. Last round of medications, prepare CPAP machine, and then sleep. My goal is to sleep 7 or 8 hours. That should put wake-up around between 5:00 am and 6:00 am. No alarm clock on the nightstand for a long, long time has been a great part of setting the environment for optimum sleep.

Then, there is Parkinson’s disease to contend with. I am not sure how much my restless leg syndrome or generalized tremors disrupt my sleep, but there are nights where my sleep will be more like two or three naps, stitched together with periods of no sleep between 4 to 6 hours of sleep.

I have Parkinson’s. So?

Been a lot of discussions in the media this past week about Parkinson’s disease. Pundits arise to add their voices to the groundswell. The talking heads all quickly shift to the debilitation. They use the disease, perhaps even weaponizing it, to marginalize and defeat the person. No one has taken the time or put forth effort to learn about Parkinson’s. Ask before you make an assumption. Seek out someone living with Parkinson’s as your source, not merely relying on a soundbite.