The Pain from PSP – not anywhere near as bad as I thought, but for a reason. I must say that many people with PD/PSP are ravaged with pain and therefore this is written about my experience ONLY and I don’t mean to disrespect anyone!
Like many people, I’m not a fan of pain, and it’s something I wasn’t particularly looking forward to – to say the least. The really good news is that it hasn’t even made the top ten of challenges.
To be honest – and I always try to be – the pain I used to have before PSP was worse, and I believe there’s one simple reason for that: Yoga.
Before my diagnosis five years ago – initially thought to be Parkinson’s but later confirmed as PSP – I suffered from terrible back pain, especially when traveling or doing anything out of the ordinary like bowling or lifting suitcases. As a kid, I had an ACL replaced – that was far more painful than PSP and required morphine shots.
So what’s the difference? To me, it’s Yoga. Before diagnosis, I didn’t exercise and certainly didn’t stretch or work on suppleness. My body – far from a temple – was a creaky, painful place.
When I was diagnosed, the hospital physio gave me advice I’ve quoted time and time again: I must take up exercise – walking, swimming, running – and more importantly, she recommended Yoga. I said emphatically, “No.” She suggested Tai Chi. I said emphatically, “No.” She said, “Dance.” I said, “Yoga.”
Thankfully, I embraced it. I found a simple routine, hired a trainer, and now I do it almost every day – over 95 percent of the time. I’m no scientist, but I’m absolutely convinced that the pain I would have from PSP would be terrifying if not for the exercise. If I lived the same way with the rigid muscles I have now, I’d be truly crippled by pain.
PSP doesn’t come without major secondary pain. From falls, my body hurts, bruises, and bleeds. From muscles that my physio and other specialists describe as the stiffest they’ve seen, there is pain. My knees, at times, are agony. I need regular physio, massage, and acupuncture to treat the stiffness. But truly, it’s so much less than I expected – and way, way, way down my list of priorities. That’s good news, and it comes with my commitment to maintain Yoga every day. I said 95 percent because some days I need rest.
I don’t know what inspired me to be so relentless about Yoga and to take it on and even by the kit and stick to something I hated – but the truth is I actually love it now and look forward to the feeling and even side benefits like the way I have leanred to breathe (apparently I did that wrong for 45 years – something I thought was a pretty easy thing :-))
On a slight tangent, I’ll add that the best thing my trainer taught me was how to fall. He made me practice until we felt I intuitively knew how to respond to a fall. So far – with probably dozens of falls over five years – it has saved me from serious injury.
So, some good news. I have many issues: no balance, unable to walk, using a wheelchair, emotional challenges, extreme stiffness, little sleep, and very troubling eyes. But thank G-d, pain is low – and I pray it stays that way.
I just have to add, for completeness, that the single most painful experience ever happened five years ago during diagnosis – a lumbar puncture that accidentally hit nerves. Nothing in the world prepared me for that, nor for my son who heard my scream from outside. I was asked to do another one – and let’s just say it took a lot of persuading and a different hospital.
It doesn’t matter, in my view, whether it’s Yoga, stretching, Tai Chi, Qi-Gong, or something else – but committing to one of these practices consistently is, in my experience, the key to reducing what could otherwise be overwhelming pain. In a condition with no cure, it’s empowering to know that there are still things we can do – things that make a real difference.
Wishing everyone navigating PSP or similar challenges as much comfort, strength, and pain-free time as possible. Keep moving – it matters more than you think.
