Life with Parkinson’s is tough and certainly offers enough to keep anyone’s attention and time. The reality, however, and not just at unique moments, is that Parkinson’s co-exists alongside other burning issues in life- some bigger, some smaller. It is in some ways the norm but due to the nature of PD it offers a special twist – a compound impact.
Many of us have families, some older, some younger, with their challenges – often three generations at the least. For young Parkinson’s patients, it is often aging parents, teenager/young adult kids, and your own generation including your partner, siblings, and yourselves, of course. Amidst this population – and surrounding friends and their orbits – there will always be a challenge out there.
Many have financial or mental health challenges and many face other health issues and, Heaven forbid, other tragedies which come at them completely unannounced and by surprise.
This, for good and bad, is more the norm than we think. I used to believe that Parkinson’s was ‘my thing’ – it was my main challenge to deal with. It is simply not the case – day by day, week by week, we face other challenges and we have to learn to cope and even thrive amongst the swimming tide – because we don’t live in labs where everything can be isolated from one another.
The additional challenge for people with Parkinson’s is the compound or cumulative effect. The above would be one thing, but the challenge is that the other bolt of lightning can have a huge impact on Parkinson’s itself and shift its direction – the stress, the impact on positivity, the impact of stepping out of routine, the compound impact coming from lack of sleep, the impact of additional medication. The combination of the two together has the danger to pull a person under…How do we deal with it?
Sadly, I am not an expert in that it happens to me frequently and I don’t know if I am the best-placed person to provide the answer. As a writer of a blog for therapy, this is not a good answer so I will have to do better.
How do I learn to deal with it better?
So here, live as they say, is how my blog is helping me….I actually wrote about it a few weeks ago in a post to a friend with PD – Person (X).
Although each situation is very different, I actually think that what I said then makes sense for me looking back on a relatively recent challenge, now and thinking forwards. I wrote (and I quote directly):
I don’t have much in the way of solutions and am certainly not a professional, but I have been thinking about what I would say to myself if it happened to me again, and it is, of course, not ‘be positive’ or ‘it could be worse’ or ‘dig in there,’ but the following thoughts now come to mind as I apply it to (X).
You (X) may doubt your self-worth and value, but I can tell you honestly that you have been a lifesaver to me and my wife and many others as recently as days ago. You have enormous powers of love, care, and experience, and there are many people who (I can speak only of the virtual world) are rooting for you…just dig deep however you can to pull through what is clearly a rough patch…and we are here to help.
Keep up with your routine – I have found there is a cycle of despair – in the apathy, depression, gut-wrenching hard times, it becomes so easy to let up the physical fight – hold onto the exercise and routine as an anchor.
Little victories – whether for some it is an hour of music, for others a cup of tea, treating yourself to a new book – give yourself a little bit of positive, easy diversion and attention. Solving the big problems in life may be too much at this junction, but small victories may be possible.
Reach out to someone and let them know you could use a chat…try to find someone you can talk to.
For once, and it doesn’t happen very often, I am going to re-read what I wrote and lean into it. The situations are always different but we need to be prepared for them, because they will for sure come.
My lesson to myself – for the times if and given that is so often the norm inevitably in reality when the second, third, or fourth bolt comes – is don’t lose my self-worth, people care about me and are there to help, I need to keep my routine, I need to aim for little victories, and most of all reach out to someone who can help.
Like most things in life, everything is relative. I am so so so so blessed in so so many ways and always must remember that. I quoted Churchill the other day ‘Success is not final, failure is not fatal: it is the courage to continue that counts.’
I am notoriously bad at taking my own advice but I am starting to think it may be worth it. It also saves a fortune in the cost of therapists and self-help books although these have their place and sometimes I’ll admit are critical. On that note I will go off to Yoga (once I translate this, proofread it, and publish it).
