Much is written about being a Parkinson’s patient and about being a caregiver or partner of a PD patient, but there is less written about how to be a close friend to someone with PD—at least from what I have seen.
Yet this ‘unofficial’ role is so important and can have a huge positive impact on both the patient and the caregiver, taking the friendship to a different level in both directions.
While I now have many new friends with Parkinson’s, I thankfully have no experience in helping a very close friend through the journey of discovering they have PD and adapting to the changing circumstances. However, I do have experience from the other side and think it is important to reflect on.
As statistics go, it is highly likely a person will encounter being a close friend to someone dealing with such a condition, especially as we age. It is a muscle we all need to flex, even if it is not one we relish.
A number of my friends probably guessed I was going to comment on friendship today, as my wife and I are fortunate to be spending time over the weekend with close friends in London. We have known them for many years, and I am very grateful we are still close and in regular touch. Despite the distance, many of them play a huge role in my journey, as do my more recent friends at home. I love them truly and this is a tribute to them and for other people to benefit from some of the things I and they have learned!
So what then is my subjective and probably very debatable advice—without, of course, looking into the subject in any detail or research?
Three broad topics: the why’s, the don’ts, and the do’s.
Why
I will admit this out of the gate—it is not easy being friends with someone like me who has PD. It is so hard to know how to behave—do I back off, go into overdrive, give space, or not? Do I treat them as normal, or not? It must be so hard. With me, in particular, it is important to note that it wasn’t easy before PD either.
The truth is, the PD person likely doesn’t know themselves what they want from a friend. They go through huge ups and downs and ranges of needs and wants—partly because of pain, partly because of the flow of dopamine which controls so much of their behavior, partly because it is not a nice disease to see someone go through, and partly because they are regular people with their own unique characteristics and a very individualized, un-curable degenerative disease layered on top.
That it is hard—no question. But the why is because it makes such a huge difference, whether or not it is acknowledged. PD is so tough on the person suffering it and possibly more so on the family. The support of friendship can make the difference. A kind word, a kind deed, a shoulder to cry on, and an ear to listen to both the PD patient and the caregiver can be the thing that makes the difference and gives some sense of relief. It also defines their sense of self-worth and allows them to have time off PD which is crucial.
I don’t often acknowledge it, but it is huge. To all my friends—your help and support truly make a difference.
Don’ts
Some things are simply hard—visiting homes of families mourning, visiting people in hospital—these are hard for most people and are for me. What to say? What to do? There is not necessarily a simple answer—it depends on whether you are introverted, extroverted, experienced in the matter, and can therefore relate or not. It is not a skill we are usually taught, and 99% of us are not professionals in the field.
Being a friend to someone with PD is like that. What I can tell you are some general things I have learned—most of which I have written about and are bugbears of most of the PD people I speak to.
These are just mine—others have their own:
As I have written about in more detail in a previous blog, don’t ‘be positive’: The throwaway term ‘be positive’ is really hard for people to hear. It makes a lot of us understand that most people have no idea what it is like.
In the same vein are phrases like ‘it could be worse,’ ‘look on the bright side,’ ‘I know how you feel,’ ‘it is the same as all people getting old,’ ‘you look amazing,’ ‘it may not get worse,’ and ‘no one noticed you fall’ when it is clearly not true. These expressions are unhelpful.
I know myself how easy it is to use these ‘conversation fillers.’ In my experience, they really don’t help someone like me, and this makes it hard.
I have my fears and worries. I have been and am scared. Loss of control and dignity are the things that freak me out—the idea of being in ‘nappies’ and having people take over the very things I so enjoy being ‘in control of’ is and is going to be so tough. A few precious weeks ago, before the revitalization I have had from the Produadopa/Vyalev pump, I thought I was about to reach the point of no return—the moment when life would start to ebb out of my control.
Reflecting the points above, PD is tough and the fears will likely materialize, so please acknowledge and respect my fears and don’t say “be positive,” etc.
Also, don’t say in response to your fears – “it won’t happen.” It is probably the disease in which it is most guaranteed to happen, but I pray and hope it comes in a very long time due to my fight against it—the exercise, pills, search for new technology, diet, and hundreds of other things. I am fighting it hard but acceptance and not denial in my view is a better strategy. I would not voluntarily tell people this will happen to them but for me personally, it is important that it is accepted.
There are I am sure many more don’ts, but I want to focus on the important thing – the do’s.
Do’s
Your role can’t be underestimated. You are not stuck in the day-to-day hell which many experience. You can offer much-needed relief, support, advice, and help. You can make the difference for all who are going through the pain. So—don’t abandon the person because you don’t know what to say or do, or feel that you are not being invited in—they probably need you.
Be there: Find a way to be there in a way which respects and values the person with PD, which shows you care and are listening to them. Let them know you are there for them in a way which doesn’t smother them but which doesn’t make them feel you have gone cold. I know it is a hugely difficult task.
Stay ‘normal’: Be yourself and find a way which fits you and the nature of your friendship. You were friends for a reason and because of who you are. My advice is not to become someone new—be yourself and find ways to be yourself in the situation. Recreating yourself and also changing massively the nature of your friendship is probably not the answer.
Maintain a two-way relationship: Don’t let PD consume the friendship. In my view, the last thing a PD person wants is for the whole discussion to be about their own challenges. They probably want, where possible, to continue to have a two-way friendship where they can talk about your challenges, celebrations, and needs. It is healthier that way. Don’t make it a ‘hospital visit’ type of relationship.
Use humor, honesty, fun, and challenge: What I have set out probably sounds like a minefield, and I won’t pretend it is easy. It is, however, still a friendship, not a social worker, carer, or professional role. For both of you, it should stay based on friendship—laughing together, crying together, having fun, being normal. It is so nice to just chat with someone, have a coffee, talk about normal things in life, love and be loved, trust and be trusted.
Make mistakes and move on: The balancing act above is virtually impossible – we will all fall down. Mistakes are ok – on both sides – we are all human. Make them, recognize them, move on. More than that, if you are close friends, it is also okay to challenge—if you are close friends and see something that really needs to be pointed out, then you should—with sensitivity. Close friends have told me recently of my addictive behavior, and I am trying to listen. Other close friends have also given me various forms of advice for which I am grateful.
I have fantastic friends—some I see more than others for many reasons. Above all, they continue to make life fun, interesting, and interactive, each one differently. Nothing I write about is directed at them as criticism- my friends at home, in London, and elsewhere (including online) are awesome – I truly hope no one takes this as anything other than a source of hopefully valuable insight for others.
All of us in life are going to experience our share of tragedy and sad/hard times. We will all be affected by it as our friends will. It is a set of skills we all need to acquire—sensitivity.
Every person is different, and every friendship is different. It is impossible to write fully about this topic and not generalize. It is, however, important to think actively about how to approach a friend suffering from something like PD. You can make a huge difference.
I would appreciate any feedback on this as it is written based on how I see things at this point, almost 5 years into a very accelerated, highly individual PD journey that has suddenly improved. Other PD people and indeed I, at different points, would say different—but I think it is important to share nonetheless.
[goos feedback from the post – apart from the fact that I probably used too many words 🙂 one of my best friends pointed out the key to him is to not avoid the elephant and get it out on the table early on and to start “running with the ball” after all most people and many of my friends have their individual struggles – thx]
