Progressive Supranuclear Palsy

If you follow this blog, you may wonder why I have not been posting regularly. The truth is that life is rather overwhelming at the moment. This year has been somewhat challenging to say the least.  

During lockdown, my father began to say that he was experiencing difficulty walking. Thankfully he was not in any pain, but after a couple of steps, he would need to sit down. He visited his GP who diagnosed, “old age” and suggested that my dad might need some physiotherapy. Unfortunately, the physiotherapist did not feel there was anything he could do. As we began to enter into the third lockdown, my dad’s mobility worsened. He was starting to fall and living in a large detached house in Nottingham was causing him further difficulties. The frequency of these falls increased, and I knew that he needed to move near to me in South Yorkshire.  

The ideal solution was to sell his home and move him into a bungalow near to us. However, not wishing to go into too much detail, his home was not solely registered in his name with the Land Registry but the name of someone else, who refused to sign.  We applied for something called Attendance Allowance. This is a non-means tested benefit which provides additional funds to the elderly, who may be experiencing a long-term health difficulty. My dad’s inability to walk meant that he was eligible for the full amount each month. If we could find a suitable place near to us, then we could use the money for rent. At the time, my dad did not want to move in with us because he has always enjoyed his independence. Furthermore, our house is a new build with much of the downstairs being open-plan. We did have a spare bedroom but it was upstairs.  

In April we found an ideal ground-floor flat near to where we live. It had a kitchen, dining and living room, a bedroom and a bathroom. We moved my dad in and I registered him with my GP, arranging to see my doctor with the hope that he would be able to provide more answers. We are very fortunate to have an exceptional GP, who must have spent a good forty minutes examining my dad, before he suggested a diagnosis of Parkinson’s or Parkinsonism. He informed us that with covid and the shortage of neurologists, it would be a long wait to see a specialist to confirm the diagnosis. We therefore opted to see a private consultant because arriving at a diagnosis was key to providing the correct care for my dad. Parkinson’s is a condition that my maternal grandmother experienced in her last years. I thought that the condition was characterised by shaking, especially of the hands. I failed to see how my father could be experiencing such a condition, when he had no such difficulties. 

The private consultant concurred with my G.P that the symptoms suggested Parkinson’s or a rare form of Parkinson’s known as Progressive Supranuclear Palsy. There was no specific test to give a final diagnosis. The only way to do so was to start my father on Parkinson’s medication and if there was no improvement, then the obvious conclusion was that it was Progressive Supranuclear Palsy or PSP. Unfortunately, the medication made no change to my father’s symptoms. When we returned to see the consultant in September, PSP was officially confirmed.  

PSP affects eye movement, balance, mobility, speech and swallowing. It is called Progressive because the condition becomes progressively worse.  Perhaps the most well-known person to suffer from the condition was Dudley Moore. Some of the early symptoms of PSP are similar to being drunk and sadly, there were many initial false reports in the media suggesting that the famous comedian and actor was attending events heavily intoxicated.  Moore died of pneumonia in 2002 secondary to immobility caused by PSP. The most common cause of death by sufferers is Aspiration Pneumonia. This arises because muscles in the throat become weak and uncoordinated, and food and drink accidentally trickle down the windpipe and into the lungs. Another common cause of death in PSP is falling. This can lead to fractures and head trauma. It is a cruel way to die.  

I am a very well-organised person. I have no difficulty in finding out what I need to do and carrying it out. What services I need to contact. What I need to buy etc. From the moment my dad moved up here, I found it easy to apply for things such as a Blue Badge, a mobility scooter, mobility aids, and professional advice. However, the main area that I have struggled with is the emotional side of seeing my parent become weak and vulnerable.  

My dad has always been a practical man. He could do anything such as wiring in lights, putting up shelves, decorating and fixing anything I had broken around the home. For all of my adult life, he has been there at every house-move, carrying out a never-ending list of jobs without complaint. He played with me as a child and answered every question I asked. He taught me about music, politics and history. He used to wait for hours for me at ballet school. When I had children, they adored him equally and he would patiently play nail salons, sweet shops, schools and Dr Who. I see him now the man I adored as a child, who supported me throughout my life, always sending his last fiver to me at university; a deeply kind man who now struggles to get up from a chair, who is constantly losing his balance even with a mobility walker and is reliant on me for so many simple parts of his day such as eating and taking his medication.  

Recently, we had a terrifying scare. My dad had developed an infection and he fell in the bathroom. Fortunately, we were on our way to collect him for dinner but it was one of the worst moments of my life seeing him lying on the floor, where he had been for over an hour. We just about managed to get him up, but putting him in bed was difficult and we could not even sit him up to give him water. I called an ambulance but covid is still so rife in our area that we had to wait until the next day for the paramedics. My dad has never been tactile and rarely shows any emotion. But at one point when he was really weak, he reached his hand out to me and as I held it, I realised how much things had changed and how, after fifty years, the balance had shifted and it was now my turn to protect him.  My husband stayed overnight with him trying to get him to take water and after two courses of antibiotics, he finally recovered. We spend most of our time worrying that he may have fallen even though we have installed cameras and are also in the process of installing an alarm. 

When I go to see my dad, I am reminded of Jacques’ monologue in As you Like It. The one which begins All the World’s A Stage. Here is my father facing his final act of “second childishness.” I am determined that I will care for him and we are currently looking at ways that we can alter our house or find a bungalow that we could move into.  My mind will not be at rest until he is living with us. I do not want him to have to go into a home.  

Yet, there are always positives to be taken from any experience, even as challenging as this one. There are still so many unanswered questions about PSP and Parkinson’s. I have managed to arrange for my father to be a part of medical research at the University of Cambridge. I know that this will truly help to give his self-confidence a much-needed boost and make him feel as if he is contributing to something of value. The charities Parkinson’s UK and the PSPA have welcomed us in and ensured we are educated on every aspect of living with the condition from Blue Badges through to equipment and legal matters.  At a meeting today, I heard the stories of those who have lost their relatives and partners to this and it was deeply moving. I hope that as I get to know these people more, I can share these stories and help to spread awareness and educate people.  

There are many things I should be doing at the moment which I am struggling to find time for such as sorting out the garden and writing another book. However, of all the challenges I have ever faced in my life; this will be the one that is most important and that is why, for now, it is going to have my full attention.  

If you are considering supporting a charity, please do consider these two Parkinson’s charities.  

https://pspassociation.org.uk/

https://www.parkinsons.org.uk/

A primer on progressive supranuclear palsy - Hospital News

Elisabeth Basford is the author of Princess Mary, The First Modern Princess.

Available here. 

Princess Mary: The First Modern Princess: Amazon.co.uk: Elisabeth Basford:  9780750992619: Books

4 thoughts on “Progressive Supranuclear Palsy

  1. So sorry to hear of your dad’s illness. It must have been a very upsetting time for you all.  He is lucky to have you near to help him – he sounds like a lovely man who deserves the best of care, which I know you are giving him.  Sending love and a big hug xx

    Annberly Maw

    Liked by 1 person

  2. I share so much of your pain…my husband a brilliant engineer who has recently retired has PSP. I am a teacher but like you made the decision to care for my hubby at home until the Lord takes him home. It’s hard at times but I will not give up on him he deserves my everything. Big hugs to you from South Africa…
    Blessings Helen

    Liked by 1 person

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