I watched this presentation yesterday by Matthew Croucher. He is such a good presenter and he presented at the Parkinson’s Conference my husband and I went to a few years ago. The previous topic was about Anxiety, which is very much one of the things that go with Parkinson’s.

He talked about ‘Coping’ with Parkinson’s and it is well worth a watch. He has a very easy style of presenting and holds your interest throughout. He certainly makes a lot of sense.

I have put a few things in here that resonated for me. These are taken from the presentation together with some thoughts of my own here and there.

He talks about a ‘Stress and Coping’ Model by Martin Seligman and describes stress as a pressure on us and coping is what we do as a response. There are different kinds of stress such as:

  • 1.Positive but stressful events – such as weddings.
  • 2.Negative stressful events – like being told you can’t drive anymore.
  • 3. Environmental stress – like having loads of stairs in your home.
  • 4. Stressful aspects of ourselves – such as motor symptoms.

He talks about ways of coping with these stressors and some ‘traps’

  1. Inflexibility – only having one way of responding even if it doesn’t match the situation.
  2. Avoidance – the way of coping with certain situations can be by avoiding those that cause stress. This can be problematic ie. if you start to avoid social situations because you don’t want people looking at you if you have tremors or mobility issues and you start to become self-conscious. So you avoid going out and shut yourself off from the world. You may need someone to encourage you to keep being out there in the world. Avoidance can feed anxiety and make it worse.
  3. Grief misinterpreted – When faced with loss can show as anger, look like depression or there may be calm acceptance or denying the loss ever happened. From the moment of diagnosis, you can have quite a different world view, a different sense of self. This diagnosis is a series of losses and the grief associated with them, like losing your licence, your mobility, having to move out of your house, having to move into a facility without your spouse. Grieving is normal, not to be seen as having something wrong with us. It may lessen over time or change.
  4. One trick ponies – only having one way of dealing with things. He talks about men (sorry) often feeling they need to fix things. Women may come to their partner with an issue/fear/concern/problem they want to share. Sometimes men think that they are expected to try and fix whatever it is that is concerning her. In fact, what women often need is just someone to listen.

Top tips to cope:

1.Feed your body and soul. Stock up on good things that help us.

2. Optomise your symptom control. Make sure you make use of your Neurologist or Neurology nurse if symptoms are not well controlled.

3. For helpers. ‘Don’t just do something, stand there!’ – First do nothing, just be there for them.

4. Know your automatic responses and become more deliberate. Use whatever strategies work best for the situation you are facing.

5. Develop good plans in advance, ie. When I can’t drive, what is the plan? If one day I can’t live in our home, what will we do? How am I going to deal with that?? These things always need to be provisional but having some ideas in advance will help with coping with situations when they arise.

What do we do when coping is overwhelmed? In the short term – keep safe and wait for the storm to pass. Wait it out.

If we’re overwhelmed longer term or short term but severely overwhelmed – GET HELP!

If you get the chance to hear Matthew speak he is well worth listening to. This presentation was an hour long and made a lot of sense. I especially like the advice of ‘Develop good plans in advance’. As a planner that resonates with me, and my husband and I have had several conversations about the future. Selling our previous house was part of our plan to ‘future proof’ our lives a bit. Talking about the fact that one day I may need to go into care and telling him I will understand if/when that needs to happen for both our sakes. Setting up Enduring Power of Attorney before there are any cognitive issues, so that I have the opportunity to nominate someone I trust to take care of health decisions and financial decisions if I can’t do it in the future.

I figure there is so much about this life with Parkinson’s that is outside my control, that anything I can control I will absolutely want to be able to do so.

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

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