Living on the Downhill Slope

There are lots of movies and self help books with a mid-life crisis theme. You know, when you suddenly find a clock ticking away in your brain. The clock is actually counting down. For some, it’s the first time personal mortality thoughts occur. For others, the clock is a reminder of all the things you haven’t got around to doing. Fancy sports cars, speed boats, sail boats, running away to some exotic location, divorce, the mythical trophy wife. It’s amazing the extremes some will go to trying to slow or stop that ticking clock. Somewhat later, many, unfortunately, have to deal with serious health issues. Others have to deal with the passing of parents, siblings, and friends.

Aging and depression

For most people in my age group, experiencing either good health or declining health, one eventually begins to really contemplate their impending mortality. Those thoughts along with having to acknowledge I’m in the “old/even older” age group, the passing of so many old friends and acquaintances, along with all the accumulating little issues can cause one to feel depressed to the point of actually being diagnosed with depression. Many of us, as we age, start to use the term “sliding down a slippery slope” as shorthand for all accumulating health issues. In addition to being depressed, I also have Parkinson’s, Kidney Failure & Peripheral Neuropathy. Three progressive illnesses and all are tagged with the “no known cure at this time” label. Thinking about it just adds to my depression.

At times, I somehow feel all my worsening symptoms start to overwhelm me. I also feel as if my symptoms actually worsen daily. I also simultaneously question whether any of those thoughts are really true or only due to finding myself in a heightened emotional state. Occasionally, I find myself stuck on the theoretical thought “when is enough enough?” “When is enough enough” is just an expression I read in a sociology text. I should, I suppose, find better words to describe the extreme frustrations/irritations I often feel in simultaneously managing three or more serious progressive diseases. An example of minor irritations lodging in my brain. Why do so many patients, myself included, use the word progressive, a word with positive connotations, when they actually mean “worsening?”

Progression and Parkinson's

I don’t think anyone would label having to manage three serious illnesses as fun. For me, management has revolved around seeking the best medical care and treatment, education and keeping up with all the latest research, regimens of diet and exercise, seeking therapeutic help with my mental state, the support of my wife, family and friends. Sometimes I feel I don’t do anything else. Progressive diseases are relentless. I don't know what else I can do. In some cases, I have been able to slow the pace of some symptoms and lessen the impact of others. However diseases are labeled progressive for a reason.

The “Now of It All.” The phrase “in spite of my best efforts” is often in my mind as in: In spite of my and many others best efforts, the impact of most of symptoms has continued to worsen and my Quality of Life severely impacted. I’ve noticed that when two different diseases are described with the same symptoms, the impact seems multiplied. Is the multiplier effect real or just in my brain? Both Parkinson’s and Peripheral Neuropathy affect balance and weakness. Over the the last several years, my balance issues have, despite braces, corrective shoes, and exercises aimed at better balance, significantly worsened my mobility. I literally experience a lost in space sensation from the knees down. I’ve gone from walking unaided to using hiking sticks to requiring a walker to now finding myself in a wheelchair because of a number of falls with and without supportive devices. My balance has deteriorated to the point I can’t take a step unaided without having a serious fall. I can take a few aided steps and then my balance issues, weakness and numbness in my legs stop forward progress and perhaps a little further with an aid on both arms.

Have I given up?

No, I have not given up. I am trying to better express my gratitude to all the people who have and continue to help get me through my health journeys. I continue to see a Physical Therapist twice a week for intense exercise sessions. I see a Cognitive Therapist once a week to work on lingering cognitive issues. Most of my physicians are specialists. I am concerned about my health. I think I’m a compliant patient. I take my medications. I try to follow instructions and suggestions. I am an active participant in my follow up appointments. I go to dialysis three days a week with sessions typically lasting 3 ½ hours.

That covers the physical side of me. What about the mental side? What is going on in my brain? Although I experience keeping my brain engaged as a positive, I think I’m failing on the mental side that has been my anchor on my slippery slopes. I appear to have lost most of my usual positive attitude, I’m not using most of my coping skills. I appear to have either lost my sense of humor or no longer feel confident in using it. My gratitude and expressing it to others somehow now feels forced. I am less optimistic. I seem less interested in keeping myself from being isolated.

Wait a minute! All my assumed failings also closely match my past experiences when I’m having a pity party, start feeling sorry for myself, followed by more depression. Could that really be the real problem? I’m feeling sorry for myself for being depressed and in a wheelchair? If so, what am I going to do about it? I’m not really this version of me aiding in my increasing depression and feeling sorry for myself because I’m sitting around in a new conveyance!

Stopping my pity party

Just snap my fingers and wish it so or seek a magic pill? No, doesn’t work for me. First steps: I’m now back having sessions with my therapist and “sessions” with my Caregiver/Care Partner/spouse talking about how recognizing a problem and doing something about are actually two different things and that dropping feeling sorry for myself is going to be work and I can’t do it alone. I’ve pulled out an old guide on recognizing negative thoughts and interrupting them with positive thoughts. I am also back using my old coping skills and trying out new ones. I am trying to keep my brain engaged in positive thoughts and engage myself in the many projects already on my “to do” lists. I have narrowed the lists to only those that will really engage my brain and will, potentially, have a positive outcome. I have found my brain being idle almost always becomes my brain is full of negative thoughts.

I am trying to be better at saying Thank you! My adult granddaughter and I have engaged in a project in which she provides two questions each week on any subjects she chooses and, at the end of a week, she records my answers and, as interviewer, can ask any clarifying questions during and after the “interview.” My first interview answering two questions took two hours. Since we don’t live in the same location, we’re using a application similar to FaceTime. She has a list of over twenty questions and she reveals two questions at a time and plans to turn the recordings into a book.

Turning being sorry for myself into something resembling the old me may be long hard work but I find, obviously, parts of the process are turning out to be rewarding, engaging, and can be fun. Increasing time with my bestfriend/wife/Caregiver that’s not about me as patient and her as Caregiver has been both enlightening and fun. My granddaughter’s lengthy interview project and more time with my best friend/wife are good examples of keeping me focused on ending my pity party and reversing feeling sorry for myself.

I look forward to feeling and acting like my old self.