It takes two…

Thought I would start with something different today! Yes, it takes two or three or more, whatever you have available to you. The point of this is that it will be a rarity that anyone is completely alone in this journey. Even if you don’t have a partner, or children or siblings there will be people in your orbit who are affected in some way by your having Parkinson’s. It could be your workmate who quietly picks up and does some of the things you used to do, without making a fuss and perhaps without you even knowing about it. It might be friends who listen intently to your stories of what happened at work this week, nodding and laughing in all the right places, but perhaps not telling you that you have told this story before, perhaps more than twice. But rather than worrying you or hurting your feelings they may not tell you these things.

Anyone can be affected by this condition that we come in contact with and sometimes it may not be a strong connection but like ripples in a pond, those on the outer reaches of our world can be affected.

In my very first Blog, in which I spoke about the day I was diagnosed I wrote this in closing:

“and then Dr ……….. delivered those fateful words “You have Parkinsons’ Disease”.  I asked him if he had any doubt and he stated, “No doubt at all”.  So just like that I became a person affected by Parkinsons’ Disease and – by association – so did my husband!”

It is easy to get too ‘inwardly focussed/self absorbed/selfish?’ as a person with this condition. It is a scary thing to have to manage. To wake up every day and face the day as best we can. To try to count our blessings and hope that they outweigh the things that weigh us down at times. To live in the moment and allow joy to come through ahead of sorrow more often than not. For me, having had a knee operation and now facing significant back/spinal surgery in approximately two to three months, a life filled with at times excruciating pain is a hard one to pin a smile on. I can forget that my husband has to watch someone he loves in pain almost every day to the point of tears and be helpless to do anything to help. To not say I have told him something at least twice if not more. To cope with my grumpiness – which it’s hard not to be to be honest – and not react with his own grumpiness, at least not most of the time. To maybe drive to work at all hours of the day or night and maybe worry if I am OK all the time he is away from me. That last sentence is one of the reasons I decided to get a personal medical alarm, not just for me, but so that he knows if anything at all happens I can summon help. I often used to tell my patients that I recommended a personal medical alarm, not for them as such, but for their families who worried about them. Worried family members can be very persistent and we may not think we need such things as alarms, but if it smooths the waters for family relationships then more often than not that person will get an alarm.

Even our Doctors probably worry about us when it is difficult to find a solution. I know my GP has been very concerned about the inability to get my pain under control. He has been trying everything he could to try and find a solution. As someone who worked in a medical setting as a Social Worker, there were definitely patients with or without family, that I would carry with me and wonder and worry if they would be OK when discharged. This was especially the case if they discharged without any help and support. Knowing they needed it and sending them home without it was hard.

So, if you can find someone to reach out to and get support take it. Or, if you are offered formal supports don’t dismiss them too quickly as – in my experience – formal supports are precious and not enough to go around at times. If they are offered by professionals they most definitely wouldn’t do so if they weren’t needed.

It takes two….. or three… or four …. or more…