Growing up my kids never really questioned their father’s illness but now as they mature every now and then they will ask, “so what’s going to happen?”

The truth… “I don’t know.”

I honestly don’t know how his illness is going to progress all I know is that it will progress so it’s hard to hope for anything good to come out of this and… that scares me.

Now I know as a positive psychologist I shouldn’t really admit that I struggle with hope, but my teacher of cognitive hypnotherapy, Trevor Silvester, taught me, “we are all fellow strugglers.”

So this is where I am struggling at the moment; I struggle to be hopeful about the future.

While going through various interviews from a research project focused on people with PD who are pretty much at the same stage of illness as my husband, I realise I’m not alone.

We are the lucky ones. Deep brain stimulation surgery has set the clock back by years for most who have had surgery but the experience of PD prior to surgery has given us a new understanding of what’s to come.

Before surgery Ronnie had very little quality of life. He was in constant pain and he could barely walk. Life was not unbearable but it was hard.

Now as each symptom starts to creep back into his life we can’t help but live in fear of him returning to that original state.

So what do I do with this? How do I live, no, how do WE live a hopeful life?

Understanding the mechanism of hope has actually shed some light and helped me.

Hope theory by Snyder suggests that for a person to be hopeful three conditions need to be met

(1) the ability to conceptualise a goal,

(2) the ability to develop a strategy to reach that goal and

(3) the ability to initiate and sustain the motivation to use those strategies aimed at achieving those goals.

I guess this explains why I struggle to hope about the future.

I want to hope for a cure but after 20 years of hoping I’m not motivated to maintain that same level of hope.

The good news: according to Snyder’s model that’s ok!

It makes sense that I don’t have that same level of hope because it’s not me creating that cure, I don’t have control over this.

I want to hope that Ronnie lives a long life free from pain and full of mobility, but again that’s not realistic and I have no control over this.

So I sit staring at the screen while Snyder’s model smugly smiles back at me and I think… what can I learn from this?

This is what I came up with.

1.   Focus on what you can control

If the first step of hope is to set goals, they need to be achievable. I have no control over how Ronnie’s illness will progress, I also have no control over which treatments will be available as his Parkinson’s get worse so by hoping for a wonderful, pain free, mobile future my hope is misplaced.

What I can hope for is:  irrespective of how he progresses we will be ok.

Now that I can work on!

That I can plan for.

To some extent, that I can control.

By creating pathways to getting him the best medical care and giving him the best support, my family and I can hope for a future which is filled with love and care (I know it’s soppy but we’ve got to work with what we’ve got).

Next: You can’t strategize about “THE future”. You can only plan for elements of the future. Lesson 2:

2.   Chunking down to develop a strategy

When I think of the future, I think of the future as a whole. I’m thinking too big! I need to chunk down. This is a strategy I use with my therapy clients in private practice. When I look out at the future I’m thinking globally about Ronnie, his illness and how life will play out and… I panic.

For me to be more hopeful I realise I need to be more specific.

I want to have a life full of love and laughter. Laughter is important to me. It gets me through the day and makes me more hopeful.

I can plan to surround myself with people who make me laugh as often as possible (You see! There’s that pathway of control.) I have good friends who act like my cheerleaders and when that motivation to carry on with life dips, they lift me up and I feel like I’m on top of that cheerleading pyramid. I just need to get better at calling on them when I need them (but that’s a whole other blog in itself!).

And lastly… I realise that speculating about a future that can change at the drop of hat is ridiculous. So lesson 3:

3.   Focus on the here and now to stay motivated

This is the hardest but the most important idea. Looking too far into the future isn’t helping me. There is a theory that our brains are hardwired to focus on the negative as a way of helping us to prepare for all possible outcomes. Well if that is true then my brain is doing its job brilliantly! It just isn’t making me feel very good while it does it.

Which brings us back to:

Snyder’s plan in action

I need to practice what I preach.

(i)            Set an achievable goal e.g. This week we will see friends.

(ii)          Think of ways to achieve that goal: We will go out but if Ronnie is too unwell they can come over but DON’T cancel if you can help it!

(iii)         Make sure you maintain the motivation to achieve that goal: Warn my cheerleaders that if Ronnie is unwell we still need that connection. (Hmm… I feel another blog coming on.)

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Suzette Shahmoon, PhD Candidate is currently Assistant Honorary Psychologist at the National Hospital of Neurology and Neurosurgery.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®