Pondering Parkies with my Peers!

Tonight we had our regular group of Parkies People. I was pleasantly surprised at how many people turned up tonight. Heartening too to see the majority of the participants tonight had their spouse/partner with them. My husband was also able to come tonight as luckily he wasn’t working. I was a bit mean I suppose, but rather than sitting together I put him with some of the other husbands that support their wives with Parkies. I admit I kept looking down the table to see if he was OK. It was reassuring to see that he seemed to be chatting quite happily with those around him.

At our end of the table, we got to talking about a number of things. One topic was about how supportive our work environment is or is not. Varying degrees of support and understanding was talked about. For some there was very little support or understanding shown, despite some having worked for the same company for many years. We agreed that a lot of employers and even other staff members seem to forget – after the initial shock and sympathy at diagnosis – that those of us with Parkies need to be supported. As we are all in the early stages, we remarked on the fact that we at times felt judged and misunderstood. This is mainly because our presentation physically showed very little if any outward sign of Parkies. The consideration for most of us was the lack of recognition of the cognitive affects as these were not recognised as a Parkinsonian presentation. Because of this there was for many a lack of support and understanding.

We also talked about retirement plans. Some in the near future and others considering when was right for them to retire. Perhaps some might like to take early retirement and use the time to travel and spend valuable time with partners. Or do we hang on to our jobs and risk regretting not having left our job sooner? Many a tale starts with ‘when we retire…’ but ends with the wish list never being fulfilled because a health issue arises that means the longed for cruise, overseas holiday or travel near or far never happens. We talked about the need to seize the day and travel and have experiences now and not wanting to wait as none of us know when these things will become difficult.

Although our working lives differ, we were unanimous in saying that it is so important to seize the moment now to travel and have experiences to remember. We very much agreed that waiting for retirement to travel could be something we regretted if we didn’t go sooner. We even shared some ideas of travel destinations, which had a great deal of variety and has given us all something to think about in the not too distant future.

The group meets once a month and there is no agenda or topic tabled to discuss. We meet and often talk about pretty much anything and often totally unrelated to Parkies at the beginning. However, there is always someone who brings up an issue or an idea and we talk it through and come away feeling heard and understood. Plus, there are probably a few more travel destinations added to our bucket lists!!

It feels good to be supported by my peers and be in an environment where we can each identify the similarities we share but also acknowledge that each of us has their own unique experience.

Plenty of Parkies pondering till we meet again!