In the Parkinson’s community that is Parkinson’s Road; a Facebook based global support group that I write for and co-facilitate, the subject of communication between people with Parkinson’s and those close to them, arises frequently.  This is an incredibly important and complex subject and this post is just another brief aspect of a far bigger discussion.

My belief, as a co-facilitator of an online support group, is that a main aspiration for the group is to improve communication about living with Parkinson’s, by all those affected by the disease.  That will be the person with Parkinson’s and also those close to them.  Learning to talk about living with illness or personal difficulty can be a daunting, complex process.  For example, it may not be something people are used to doing, comfortable about doing or even adept at doing.  In my work as a psychotherapist I see, all too often, how many people have not got a broad enough emotional vocabulary to be able to describe how they feel.  I see people who culturally may be more private or reserved and therefore incredibly reluctant to disclose something intensely personal.

Then there is the issue of conflicting needs.  A family member, friend or carer may have a need to know more, or to seek to know more frequently, whereas the person with Parkinson’s may want to only disclose about certain landmark changes, may want to disclose only certain types of things, may want to disclose only what they believe to be significant, which can be at odds with what others perceive as significant.  Sometimes, a person with Parkinson’s may simply want to maintain a privacy that they had always maintained in life and may resist and resent any suggestion of having to share or disclose to others, no matter how close the relationship.  These are but a few examples.

Some people with Parkinson’s may struggle to give any time for thought or discussion about Parkinson’s unless they are really required to, for they may hate the subject, be bored with/fatigued by it, be fearful of it or be in some other personal reaction to it. There are endless complexities to add to all of these examples. So, my hope is that groups like Parkinson’s Road help people like me, with Parkinson’s, and those close to us, to practice that communication.  To learn the skills for communicating such complexity and to learn to develop trust, comfort and the reassurance that communicating; sharing, at least a minimal amount and at mutually helpful junctures, will be of benefit.

Part of that process will also include learning to communicate/hear that there is nothing new to update on.  Nothing new to report, to share or to describe. The plateaus between stages of deterioration can, for some, be long periods of no deterioration or added difficulty (hopefully).  In these times, particularly, a person with Parkinson’s will often feel a sense of relief  and a desire to live as aloof to the subject of Parkinson’s as is possible.  They may just really need to not talk about Parkinson’s; just wanting a break from any periods where deterioration, and discussion about it, may have been intense.  They may simply crave for the opportunity to just focus on ‘normal’ day to day life issues, so to speak.

It is these times that can be particularly hard for those close to people with Parkinson’s, for they may feel shut out, excluded or not up to date on the experience that the person they care about is having.  This may add to their own anxiety.  Yet, such times are absolutely essential for the person with Parkinson’s, for the constant subject of Parkinson’s can feel draining, all consuming and even overwhelming.

The person with Parkinson’s may feel guilty at having to indulge in such times of reduced communication, for they may be aware that this can trigger uncertainty in those close to them but, my view is, that as they are the person with the disease, they are entitled to have this space.  They must be sure, however, to communicate something to those close to them, to indicate that they are okay; hence the “There is nothing new to describe or report” type of statement.

My own view is that as long as something is communicated; something honest, then that is good, even if all that is communicated is “There’s nothing new to report.” Sometimes, there is literally nothing new to report.  I would be concerned when people go quiet; withdrawn and uncommunicative. That is more a sign of increased risk of emotional distress or difficulty. This is something that I would urge those close to people with Parkinson’s to watch out for.

Communication about the disease, or about the person with the disease, can also be something that those close to the person with Parkinson’s may need a break from.  How often do the partners of those with Parkinson’s have to endure Parkinson’s Disease as the opening or headline discussion at social events, during routine phone conversations, emails and letters between other family members or friends?  How often is this subject set above, in terms of priority and importance, all other matters that are communicated about?  How often is there an occasion where Parkinson’s is not discussed?  It may always be there when, in fact, the ideal would be to not have to think about it beyond the very minimum required in any given day.  It may have seemed a long time since the person who does not have the disease, was actually made to feel like a priority by others.

Then, there are friends and family members who are close to the person with Parkinson’s but who are not a part of their daily, weekly or even monthly life.  Here, the dynamic differs yet again.  In this case, the person living at a distance from the person with Parkinson’s can feel ‘out of the loop’ and can build an anxiety about what is developing between communication updates or may develop a very different sense of what is happening in the life of the person with Parkinson’s, than that which is actually taking place.  The distant relative or friend may develop a stronger need for communication and information and this may be in conflict with what the person with Parkinson’s wants to invest in the subject; especially at times when, as described above, they themselves need time out from the subject as much as possible.

Or, conversely, the person with Parkinson’s may be the needier party and may push for the extra level of support that may put their distant friend or family member under pressure to provide a level of support that is very difficult to sustain over long distance.

Clearly, there are many variables here and each has an almost endless number of variations and complexities that further make the act of communication one that can seem like a minefield to navigate through.

In conclusion, I would simply recommend that communication between all involved should be as direct as possible, helpful, simple, unambiguous and honest.   It should be factual.

It should be remembered that the person with Parkinson’s does not have to disclose anything and it is their right not to do so when they do not wish to.  It must also be remembered that those close to the person with Parkinson’s are affected and impacted upon, particularly those who are directly involved in the daily life and support/care of the person with Parkinson’s.

Whilst it must absolutely be remembered that the person with the disease is the person who is primarily in the need of support and care, those close to them also have feelings and needs that must be considered, and met; unless the illness itself prevents the person with Parkinson’s being able to meet that need.  This is likely to be the case at least sometimes and, sadly, almost inevitably in the later stages of the disease progression.  This is why those close to a person with Parkinson’s can benefit from gaining support from other people in a similar role or situation, rather than seeking that support directly from the person with Parkinson’s.

(C) Dean Parsons. 2018.

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