The fight with PD – head on or guerrilla tactics

A couple of years ago, a therapist said something which profoundly impacted me. It hit me like a truck, initially making me to be honest very angry.

Over time, it has really settled, and I have become inspired by it.

I am not sure whether you will react the way I did or as I do now, but I think it is important to share, and not necessarily only for PD patients (again, as a caveat, this is my blog and reflects my non-medical opinion only!! Seek proper advice please!!).

I described to her when I met her the fight I was waging, and I used terms of war and battle. I talked about the fight in all aspects to not give an inch. Meds, supplements, exercise, yoga, physio, acupuncture, diet, work and OT activities, speech therapy… I was breathless at the end but I described it as a full-on war.

She said, paraphrasing, “You are fighting the wrong type of war.”

She used two analogies which stuck with me…

Tsunami – She compared my struggle to a man standing before an oncoming tsunami, trying to hold it back with bare hands.

Star Wars – In the original movie, there is a scene in which Luke, Princess Leia, and the crew get stuck in a room where the walls are slowly closing in, and the first reaction is to push relentlessly against this.

She suggested I was pursuing this approach. She then said it is a wasted effort. It will win inevitably. You need to fight and stay positive, but you need to fight ‘cleverly’. She suggested I accept this reality and adapt, be flexible, fight a fight that is one you can score wins in.

We carried on discussing it, but I was not listening—I was furious.

Of course, I must fight it head-on with all I have got. She was suggesting, in my words, a “give up strategy” which is simply not an option. I was hard-wired a specific way.

After a while, it began to sink in, and I have to say (for me) she has been proven right.

I have learned to accept and fight a guerrilla war. What do I mean? Let me give some examples.

Work and Stress:

As jobs go, I had a pretty stressful and relatively senior one—Head of Consulting in my country for one of the big accountancy/consultancy firms. Keeping it up was very tough because, while largely mentally okay, physically it was very hard, and the stress levels (my own doing, not the firm’s) were way too high. I found it very, very hard to maintain, and the stress was truly impacting my PD, despite my brave early decision to be open about the fact I have PD.

Initially, my strategy was to not give an inch. Every meeting had to happen, every process completed, no trip ever rescheduled. My neurologist didn’t approve, warning that while work is crucial in the fight, it must be balanced against stress.

Finally, after internalizing her words, I realized I needed a different strategy—accept the fact I will not win this way and pull back gradually, banking the stress saved to put into the fight.

Long story short, I have significantly reduced my role but, in full discussion with my bosses, moved focus to a specific practice area I am an expert in, managing a smaller (awesome) team and supporting x, y, z initiatives. 

(I know work is a very complex issue and each person has their own challenges which I fully respect – I am blessed with a work environment that cares)

The Walking Stick/Cane:

At 48, I resisted using a cane for many reasons: the clear signpost it sends, the feeling of defeat, and the unwanted attention. I simply didn’t want it.

The consequence was putting myself into dangerous situations of falling from major balance issues, and I continued to fall. The tsunami was winning.

I eventually accepted the need and ordered a cane I was comfortable with and started using it when I needed. I didn’t enjoy it, but it made an enormous difference to my balance and shuffling. In fact it gave me much more control and to an extent, dignity. 

In both cases, I took the inevitable action that PD demanded but well ahead of when I would have if I continued not to listen.

Take the Fight to PD:

It is not all defensive… it is also offensive play. Exploring new strategies, treatments, ways to handle pain, stress, and sleep. I was so locked into battle that I was not listening.

I would ignore all suggestions of people—I had my game plan and it was not changing.

One result of a more agile approach is the ability to shift gears. When Produadopa and Vyalev were discussed the first time, my initial reaction was “no way”. I will just keep slogging away with a gradual increase of pill dosage.

By the next visit, I was bad enough and accepting enough to say unequivocally yes, where do I sign? I jumped on it, and it has truly been a game changer.

New technology is coming, and with an increase in funding (and sadly the PD population), I am prepared to embrace new ideas (a little bit anyway, as anyone who tried to offer me an instant solution knows). I also know my limits and I still massively overly fight head on in other areas – in English, the word for it “Stubbornness”.

Overall however, it is a huge mindset shift in me.

Let me be clear—I will fight, fight, fight and hope, hope, hope and hope again for a magic cure. It is not, however, any longer an all-out war against an enemy that will clearly beat me (and death does to all of us). I accept it will do this and seek a clever, active fight.

It also helps me cope with the downs. It is easier to pick yourself up when you accept.

A few days ago at a wedding, I refused to listen to my inner self when my balance felt off. The result was a painful and very embarrassing fall in a wedding hall. Yesterday at the airport, I felt the same. I listened, sat down, and hit “boost” on my pump, and in a few minutes, my balance settled down. Albeit for a little while, I needed a walking cane (I took a foldable one with me).

So, this is where I am. I will fight smartly, staying positive without denial. I will accept and respect my foe, continuing to execute guerrilla warfare.

I’d welcome your thoughts and feedback (and if possible a ‘like’ here :-))