Here at Out-Thinking Parkinson's, it is our mission to help not only People with Parkinson's, but also the people who love and care for them and anyone who has their own lives indirectly touched by the disease.
One of the most valuable contributions we can make, we feel, is to express and describe the feelings and thoughts of what it is like to be a person affected by Parkinson's. We hope this humanization of PD will help others in the same situation come to terms with living with the disease and bring new understandings for the wider community too.
In this post, I would like to share my own insights in to how to care for someone with Parkinson's from the "insiders" point of view. Let me state clearly at the outset, for this is very important, here and throughout, I do not use the word "care" in the connotation of "carer" but in terms of the care of lovers, family and friends.
The Ghost in the Machine
The most important action you can take in caring for a Person with Parkinson's (PwP) is simply to see past the disease, because we are still whole, complete, human beings and most importantly we need to be seen for who we are. Please do not see or treat us for less than we were, somehow smaller people, but for who we still are inside. The only thing which can truly diminish us is if the disease is allowed by others to perpetually cast a shroud over us, to mask our human natures.
We are neither ghosts, nor shadows of our former selves, nor specters fading into darkness. The best friends in my life all see me - that's how I know them as best friends. When they look upon me, they see straight through the Parkinson's Disease for what it is, penetrating to the heart of me. They have little regard for the disease, pausing only momentarily with their gaze to see it for nothing more than a major inconvenience, one of the things that nature and life throws at us.
It is most important that you neither name, think of or treat a Person with Parkinson's as a patient, a sufferer or the disabled, but as an individual fully alive human being in their own right. Remember it is Parkinson's itself which is the dark shadow, but please help to make it only a thin veil.
I would perhaps summarize my message with this:
We are not the ghosts. We simply have a ghost in our machine - a glitch in the system.
Stress Me Not
A lot of people will know that anxiety and depression are associated with Parkinson's and that stress makes it worse. But not many people understand how much stress affects us. For me, stress is the real killer. I feel stress mentally and physically in ways which it could never even have understood before I had experienced the disease.
Remember, the very biggest amplifier of Parkinson's is stress. It locks PwP up into tight balls of pain and anxiety. Bodies become pulled into that classic C-shaped stance of Parkinson's, movement stops, muscles become knots of tensions, minds both close down and begin to race with negative thoughts at the same time. The mind and body rapidly amplify this negativity in each other. They trap each other and lock the other into unyielding positions of anguish and pain. For People with Parkinson's this escalation can happen very quickly - it would seem to me that we have become extremely over-sensitized to stress triggers. Little things can quickly be ramped up into crisis points.
So keep calm in voice and action as best you can and be always mindful that stress for a Person with Parkinson's is much, much more disabling and diminishing than for other people. I would also suggest to try to gently take away from a PwP any unnecessary responsibilities or unnecessary sources of worry too. I say gently, because having to admit that one can no longer cope like before, or that one is no longer as resilient, can be an extremely stressful thing to face and come to terms with in of itself.
Amplification and Resonation
What I feel a lot of carers miss is that their own energy impacts hugely on PwP. We are like sponges, absorbing and reflecting from the environment around us. The energies of other people amplify us greatly, either through constructive or destructive resonance. The difficult part for carers is that giving us what we need and the mindful actions which minimize the impact of the disease changes with where we are in the cycle.
In a state of Dyskinesia, for example, that uncontrolled drug-induced wriggling movement, I have found that a state of wordlessness is crucial. Carers and PwPs can prove this for themselves. If the carer speaks in high pitch, frenetic, energetic or stressful tones, I believe you will see the PwP's movement visibly become more uncontrolled and exaggerated. So in this dyskinetic phase, try to remain as quiet as possible, turn off the TV and the radio. Perhaps play some slow, quiet relaxing music or songs with a very slow tempo. Carers - don't ask questions of your friend and when you do speak to them, speak in low and languid tones. Pause often between sentences and allow them to come back to equilibrium if their movement becomes uncontrolled. Keep your own movements slow, small and understated too. Observe carefully the effect you are having and adjust your own energy appropriately.
But when in the throes of the disease itself, when immobile, stiff and rigid (Bradykinesia), then high energy, encouraging tones of voice and exaggerated movements can now help. Keep it positive and bouncy though, not shrill or stressful. Keep your own movements loose and free and try not to show tension in your own body.
Now practice moving your friend with your energy alone. Yes, you can do this!
Next time you notice them struggling to get up from a seated position, don't give them your hand, don't physically assist them, at least not in the first instance. Instead try encouraging them enthusiastically to get up with energetic words alone. Try words like "Go on, stand up, show me what you can do", "Please get up for me", "Will you stand up for me now".
Keep encouraging them, if this doesn't work first time, keep repeating you request. And if words alone don't work, try showing them how to stand. Get them to follow your lead. Keep very slowly going through the motions of standing up and sit downing again and ask your friend to mirror what you do, "Simon Says" fashion, while still encouraging with your voice.
Become a Brainiac
I hope you will be very pleasantly surprised by just how effectively carers can lend their own energy to a PwP to help initiate or control movement without giving physical assistance. This is not magic or some new age concept. It is simply that the very small part of the brain which is damaged in a PwP is only one single pathway to movement. There are still many other healthy parts of the brain which also govern motion and by bringing external stimuli into play, we can fire up neurons elsewhere in the old grey matter, over-riding the damaged pathway.
Indeed, better understanding how the brain and mind work, and how they work together with the body, is a vital key to caring and loving People with Parkinson's. It is also key to recovery.
On this theme, here is one last tip for now. Don't forget to applaud and be extremely positive when your friend does stand up with your energetic assistance alone - not only because the victory really is theirs and worth celebrating, but also because the very chemical which PwP lack, Dopamine, is produced and released into the body when we feel rewarded.
So reward us for every single victory over the disease that you possibly can. We deserve praise for over-coming, don't we? But there is still more to this. The profound truth is we can all rewire our own brains and with the encouraging help of others, we can do it quite quickly.
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