Winston Spence told his story about living with Parkinson’s disease back in October 2020. He recently found out that it’s not Parkinson’s. He tells his story to raise awareness of the disease he does have.
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It was back in March 2021 when I was having a regular check up with my neurologist. He had always questioned me about my Parkinson’s, thinking I may have had something different. He said to me that he had some good news and some bad news.
The good news was that I haven’t got Parkinson’s disease, which put a huge smile on my face. But it soon changed when he gave me the bad news. ‘I think you have PSP [Progressive Supranuclear Palsy],’ he said. ‘So what’s that?’ I asked. He told me that it affects your balance and that you may fall backwards all the time. Your speech would get worse, and your eyes will close a lot more, due to the brain not sending the right messages to your eyes, and to your legs and voice box.
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Okay, nothing too much to worry about. He printed a document explaining PSP and told me to go home, have a read, and come back in three months. When I got home, [wife] Kathy and I read it together with ‘Dr Google’, which was not a good idea. Okay there may be problems, but we have got some living to do, which is why we are always busy, either doing or planning new holidays. Life can be cruel at times, but I’m not going to sit on my bum and worry about this disease.
What is PSP?
Progressive Supranuclear Palsy, or PSP, is a disorder characterised by symptoms similar to Parkinson’s disease, caused by damage to certain nerve cells in the brain. This results in progressive lack of coordination, unsteady gait and falls, stiffness of the neck and trunk, difficulties with the eyes, slow movements, slow and low volume speech and swallowing. The thought process is also compromised, and mild dementia may result. The cause is unknown, but the disease gets worse over time.
My problems
My main issues are unsteady gait with lots of falls, stiffness in my arms and legs. I can’t swallow properly, my eyes keep closing involuntarily, which is affecting my vision. My speech has become bad – low volume and I’ve developed a stutter. No problem with mild dementia (just an age thing).
Treatment and aids
There are none. Unfortunately, none of the drugs used for Parkinson’s provide dramatic or long-lasting improvements, and each drug can cause serious side-effects.
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A speech therapist can help me a little, and the Botox I have in my eyes every six weeks certainly helps short term, but I’m not sure of the long-term effect on my eyes.
To prevent falls, I have my trusty walking stick and a three-wheel walker. I also have a motorised wheelchair (for inside use – Billi) and my big outdoor Scooter (outside use – Moby) that get me out and about to the village and further. I can still walk for short distances, but that depends on whether I’m having a good day or a bad day.
I guess that’s the nuts and bolts of my PSP. It sounds pretty nasty when you actually write it down, but I’m still waking up each morning feeling good about life. It’s just that I get tired very easily, so about 12pm I’m ready to rest either in my lazyboy chair or on the bed.
Kathy is my rock
The upside to all this is [my wife] Kathy – always there to pick me up (yes, I mean pick me up off the floor). Even to get something from the fridge or a drink of water has become difficult; she has been tremendous and does everything around the apartment and more. We still laugh a lot as she can’t understand me much when I speak. I guess my speech gets lazy when I’m with her and I mumble more. She is the love of my life.
My eyes have become a problem. The muscles in the eyes are not communicating with my brain. I had an operation on them about nine months ago to take away the excess skin in my eye lids. It was successful, but I still need Botox to keep them open. It only seems to last about four weeks, then Kathy puts Steri Strips on my eyelids to hold them open.
My falls are my major concern at present. I seem to want to reach for things all the time and my legs just freeze to the floor, so over I go. My poor old knees have had a battering and have many battle scars. We are amazed that I haven’t had any broken bones given the number of falls I’ve had. I can’t seem to step out with big steps, so going up a small hill is always a problem. Again, if Kathy is by my side and my trusted walking stick with me, I seem to make it.
I still have the travel bug
We are still travelling. We had a big trip to Europe early this year and it was fantastic. We did three cruises – one to Norway and one to Iceland and Ireland where I got COVID. Not nice, but after five days I was ready to go again. The last cruise was from Barcelona around the Mediterranean. Since then, we have been to Sydney and just did the Ghan trip from Darwin to Adelaide, which was the best. We spent time in South Australia and then time with our daughter in Tassie on our way home. We are off to the South Island of New Zealand next month, and lots of travel next year.
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I know there will come a time when I can’t do this anymore so while my feet are still touching the ground and I’m pointing towards the sky I’m fine. We are packing in as much now while I’m still able and organising different type of holidays.
Cruises seem to be the way to go for us. Kathy can still go for walks around the ship or do the gym while I can sit in the bar (or by the pool) and ‘people perve’.
The future
Yes, it is a shit of a disease. I think back about Parkinson’s disease, and think I would rather have it than PSP, but then who knows how bad I may get with it. I think the word ‘progressive’ scares me a bit, not knowing how bad it may become over the years. All I can do is be positive and take every day as it comes. Maybe I have had PSP all the time and never had Parkinson’s, but that’s another story. They all come under the same category of Parkinsonian, which encompasses about 50 different types of problems.
It’s a lot easier to say I’ve got Parkinson’s than saying I’ve got PSP. About 99 per cent of people know what Parkinson’s is where only about 1 per cent know about PSP.
This rare disease affects only about 1300 people in Australia (lucky me!), whereas about 80,000 have Parkinson’s. That’s why very little research has been done on treatments and medications.
I thought this article would help people understand PSP. It’s hard for me when I meet new people because of my speech. They must think I’m a nut case. If they only knew how I used to love a good old natter. I could talk about anything and everything, but this stutter I have doesn’t help, especially when I’m with a group of people with lots of background noise. The one good thing about this is that Kathy has become quite a conversationalist. She didn’t like talking on the phone once, but now she’s on to it. She’s become my private secretary and she’s there to correct me when I’m trying to explain something and get it wrong.
I am lucky I have such an incredible woman in my life. Also, my kids and their spouses. And the grandies are always looking out for me and supporting me. Thank you. I love you all.
Do you believe that staying positive when ill-health strikes can have a big impact? Why not share your thoughts in the comments section below?
