One week into the ‘Appears to be PSP’ diagnosis and I am coming through the denial and grieving stage and am actually seeing it bizarrely as a positive moment. Don’t worry, I am genuinely not insane…please take the time to read and hear me. I must say upfront that I can only talk here in this blog about what it feels like from a personal perspective. For the latest in science, you will need to go elsewhere.
Positive? What?
As I set out below, the name change is not actually – to me anyway – a negative moment. Sure – the new ‘Appears to be PSP’ is clearly one of the worst diseases there is and the prognosis is truly not good, but the meeting and the new name don’t actually change the fact that the symptoms and the disease were rapidly progressing. This is despite all that I was throwing at it. The meeting last week and change in diagnosis (potentially) actually marks a time at which I reflect on where I am and have the chance to regroup and make important and much-needed changes in life and outlook. Let me explain…
The new name and possible/probable diagnosis don’t actually change anything.
Just a name – Nothing has changed in my body as a result of a potential change in the name from Parkinson’s to “Appears to be” PSP-P. It is still the same biological, physical, and chemical mixture, just a different label and it is only that it ‘appears to be PSP’ to quote the current diagnosis. So basically it is the same product one minute after the diagnosis as it was one minute before the diagnosis with a different label on the tin, like a packet of cigarettes with a warning sticker on it. Even then, it is just an ‘Appears to be’ sticker. We simply don’t know what it is and with its onset so fast and close to Covid there was always that question.
The treatment remains the same – Because the new diagnosis in effect has no medical treatment available and in the case of PSP-P specifically it is somewhat responsive to Parkinson’s medication, basically there has been no change to the actual treatment.
My attitude stays the same – Whether it has the name PSP, Parkinson’s, or Joe Bloggs, my goals are the same. As Victor Frankl said (and I am leaning on him)…”Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” I had a life-changing disease yesterday and I have one today – I still have the same attitude and belief set – that it is my job to deal with the cards I have been dealt by G-d and do my best. That hasn’t changed!
So in effect, the body is the same, my attitude is the same and the treatment is the same – but there is a huge change. It is a huge change but it is not the name or the new diagnosis…
The reality of the disease is that it is quite clearly progressing despite the very hard work of the medical and other measures I throw at it (Exercise, Yoga, Diet, etc.) and despite the very impressive and game-changing new treatment I am on in the form of the Produadopa/Vyalev pump. It made a huge difference a few months ago and I still believe it does, but the reality is that the progress of the disease has and is eating this factor away. I can choose to ignore or accept this reality.
When I play back the discussion with the doctor and medical team, the changes in life that we have discussed and are in the process of making (e.g. to my work/life balance and driving) were discussed before and irrespective of the discussion around the diagnosis change. It was clear from the clinical examination by the doctor and from recent events such as major falls in the same week including one at work and some blurry vision, that something had changed. My ability to balance myself had got a lot worse plain and simple. Simply standing still now is virtually impossible without naturally falling immediately, my walking had slowed dramatically and my freezing was on the up. This was happening clearly before the appointment.
The change was and is one in reality and substance, regardless of the name. Let’s be honest with ourselves…a few weeks ago on writing about the impact of the Pump I openly blogged that my symptoms manifested themselves as looking like I had had Parkinson’s for 3 times longer than I had – 15 years versus 5 years. This is nothing to do with a name change.
Yesterday I found it physically hard to walk around the corner with my mother and dog and I fell twice in the last two days – once I landed on a sofa and the other time I caught myself in truly excellent fashion. It is simply the progress of a disease regardless of the name.
So what is the positive?
The name as I mentioned above simply signals to me a major difference/point of reflection and a call to action for the positive or depression to the negative. The change in diagnosis scientifically indicates a possible/probable understanding that the disease itself always was different than PD but it is in my view of the world just one of many other Neurological conditions that largely remain without explanation and cure….it is just a worse one with a far higher speed and sadly worse prognosis.
It is easy to see the negative in all of this – it is clear and obvious to all. But I, after a week of reflection, choose to see this as a positive pivot point.
The next few years are everything.
Without the discussion with the medical team and without the ‘Appears to be PSP’ diagnosis I would have tried to carry on as before. I would have carried on driving and potentially caused catastrophic damage to me and others in the most irresponsible fashion.
Far far worse, I would have tried to ignore the changes and carry on with something approaching a percentage of full-time and full-intensity work. Not only would it have made things much worse due to trying to maintain the unmaintainable and the stress that goes with it but it would have deprived me of using the coming period to refocus on what is important given my actual underlying medical condition. That is spending time with my family, preparing them for the next stage in life and having meaning in my life.
I believe in miracles and I pray for them. My attitude is to plan for the worst and hope/pray for the best.
I needed a huge change in focus to get things in order for my family before the clock runs down and I am grateful to G-d for the opportunity. I also needed a kick in the face to recognize the fact that the game is changing and that I needed to alter my game strategy for the next stage in the medical fight, the most important phase.
Meaning and Quality of Life – this for me is the key measure of everything. It is not simply about the number of years a person has, it is the quality of those years. Many people would disagree with me but I personally don’t want to live to 120 if it means that 70 of those years are racked with pain and more importantly I don’t want that for my family. I want them to live life.
I also want my life to continue to have meaning in itself…For whatever reason I have been given my mission in this world and it appears to need to take account of significant medical challenges, firstly from the horrific diagnosis of Parkinson’s at 45, and then despite and in spite of the intervention of what seems to be a game-changer pump device, the disease has actually revealed itself as a form of PSP.
Therefore my meaning is not one that is destined to be fulfilled necessarily by the length of my journey but by the impact I can make now.
PSP awareness – I have decided that alongside preserving my mental and physical capacity for my fight and while reducing stress to an absolute minimum by scaling back on the intensity of my work and commitments, I need to direct my time and passion to a new purpose, and that logically must be PSP awareness, the fight for improving outcomes for people with PSP and PD, and the broader goal of giving people an insight into the fact that life doesn’t end with a diagnosis of a disease – life keeps giving opportunities to give and to enjoy.
I had a conference call with a really exceptional leader at Cure PSP in the US, the son of a PSP patient. It is a very nasty disease and it impacts thousands of people (6 people in 100,000 are statistically with PSP in its many forms). It is a small group of people dealing with extraordinary challenges. Their loved ones even more so as it wreaks its damage.
I have the opportunity now to influence this community through my very limited reach as a patient going through the experience and it is something I intend to try to do.
Like all things, I need to get it together in my head – I am a week in and I think I am there and now it is time to move on with the objective.
So in conclusion – the fact that the prognosis may have changed is irrelevant. The change was happening and I actually have been given the opportunity to refocus and prepare and spend time with my family and loved ones and do something good as well.
Don’t think I am insane please…I am fully aware of what lies ahead (or as fully as anyone can be). I have done my research and googling (and like some of you have initially thought P2P is a Sony Gaming product – you will know what I mean if you have googled the letters but I highly recommend not doing it). I wouldn’t wish this on anyone, especially my family. G-d however has decided that this is what our plan includes and therefore I have to make the best of the opportunity and do what I can….this is my next journey.
I still fight PD/PSP/whatever…please share and help me with it…….stay tuned….
