One of the few strengths I have is a relatively strong tolerance for change and an ability to adapt to new situations. I’ve spent my career working in the fast-moving and ever-changing world of Mergers and Acquisitions, where the ability to ‘move on’ and transition from one thing to the next is essential.
There are downsides to this—my impulsiveness being one of them, in fact, one of many.
When it comes to accepting and adapting, I’m not sentimental and tend to adjust quickly. This is a blessing when living with a disease that is constantly evolving—and evolving fast. By the very definition of the first word in the disease I have—Progressive—it moves and changes. Parkinson’s does this too, but PSP (Progressive Supranuclear Palsy) does so at a much greater velocity.
You can see the progression of the disease in the fact that my doctors and I have stopped using the phrase “appears to be.” Every day, it becomes more and more obvious that it is PSP or something very similar.
This adaptability is important—both physically and mentally. It allows me to continue feeling that I’m living a valuable and high-quality life, and not succumbing to depression or despondency (most of the time).
But to do this, I must accept and acknowledge the change… and that’s something other people often find especially hard.
Physically
In the last few weeks, I’ve started using a walker. I now truly can’t walk outside without it due to balance issues and my shuffling gait. I find I can’t manage hills or slopes, and my daily walk—which just a few months ago included running a 5K—is now limited to about 10 minutes.
Of course, I’m working to push this boundary and am not accepting it without a fight. But it is a progressive disease, and I have to accept and adapt. So, I’ve shifted to less walking and more gym, yoga, and strength exercises.
Mentally
The transition continues. It’s unquestionably tough, and my family can attest to my frustration. But I’m moving through it and accepting the changes as they come—fast and furious.
People often tell me to stay positive and not assume the disease will continue to progress. I struggle with this because, frankly, it’s not true. The evidence is there week by week. So, I’m finding a middle ground.
I can’t simply hope for miracles or a “get out of jail free card” from above. I will pray for one, but I also need to accept and adapt to change and prepare myself mentally for what’s to come. I am a person of deep faith, and I truly believe I’ve been placed in this position for a reason. But I’m not naïve—I know I have a progressive, untreatable disease.
A Healthy Balance
There are positives and negatives in everything, and like most things, the answer lies in balance. I’m not an expert, and I’m seeing trained professionals to help me navigate this. I believe denial or false hope isn’t the answer—nor is doom and gloom. A combination of hope, preparedness for future change, and, most importantly, continuing to find meaning in what I do as my physical condition changes is key.
Above all, I am grateful to God that my cognitive abilities have remained strong. I pray that this continues. I don’t know what the future holds, but I would willingly sacrifice physical abilities to retain my ability to think and communicate.
Final Thoughts
Returning to the topic of strength—adaptability is not just a coping mechanism. It’s a mindset, a skill, and in my case, a lifeline. I don’t know what tomorrow will bring, but I do know that I will meet it with the same resolve: to accept, to adapt, and to keep moving forward with purpose and faith.
One Response
You have a clarity of purpose and faith which people, who have not been through what you’re experiencing, find hard to achieve. There are so many important lessons in this post which we would all do well to internalise. Thank you for sharing.