|
Getting your Trinity Audio player ready...
|
That was hard, but hopefully the first of many steps forward, even if they are small ones.
A little over a year ago, I was still jogging and running around the kitchen and the lounge at home. It is not something I would recommend unless you have taken leave of your senses. The floor is flat and tiled, but it involves a lot of sharp turns. Now, with PSP changing how my body moves, I am learning entirely new ways to exercise and trying to appreciate them just as much.
Yesterday, equipped with a new watch that measures wheelchair pushes and an 80s playlist, I set out to see how long it would take me to complete 1,000 pushes. Garmin sets 2,000 as the daily goal, which I suppose is the wheelchair equivalent of 10,000 steps, so I aimed for half. And it was very hard.
The constant turning makes everything more challenging. Between the chair and me, it feels like trying to turn and propel the QE2. Each 500 push lap took 19 minutes.
Still, research today shows how important this kind of activity is for PSP. Studies from the Movement Disorder Society have found that regular, moderate exercise including upper body effort such as wheelchair propulsion helps maintain mobility, improves balance, reduces stiffness, and increases overall quality of life. CurePSP treatment guidelines also show that rhythmic, repetitive exercises such as cycling or pushing a wheelchair are easier for the brain to coordinate and therefore especially effective.
So while pushing the QE2 around the living room is hardly glamorous, it is significant for both my body and my mind.
After a shower, tea, yoga, and a lot of hand cream, I felt genuinely satisfied. It felt like being back in my exercise zone, even if it was hard. I am hoping that it will get easier as I learn the techniques. I have already watched an excellent YouTube video on basic manual wheelchair propulsion.
I will never be a fast wheelchair user, but with PSP and increasing exhaustion, I have to balance exercise with rest. Last night I slept for five and a half hours, which is excellent for me. My plan is to alternate between the exercise bike for my legs, the wheelchair for my arms, and yoga. Interestingly, research supports this. Switching between muscle groups helps manage fatigue, and yoga has been shown in neurological studies to reduce rigidity, improve breathing, and support mental wellbeing.
It has certainly helped my mood. I woke feeling low, the familiar guilt that seems to hover around PSP. The patient feels guilty about the burden placed on others, and the caregiver feels guilty for taking even a moment to breathe. But today I tried something different. I kept the guilt outside the door, chose another direction, and exercised. I even improved my QE2 steering skills.
I am resting now, but I am pleased that I put my watch to use and started in my own way, at my own slow pace and with a lot of effort, to stay positive.
Throughout this journey I have tried to maintain some level of exercise and especially yoga, and I truly believe it helps me. This is no longer just intuition. Research shows that consistent activity slows functional decline in PSP, and yoga in particular supports flexibility, breathing, and mood. My own experience matches this completely.
A word of caution. It is important not to get carried away. When I got out of the shower, I decided to stand up without using the grab bar. That was a mistake. I almost took a serious fall and avoided it only at the last second. PSP research clearly shows that transitions such as standing up after bathing carry a high risk of falls. It is a constant reminder to stay alert.
Wishing us all a good day.
