Welcome to our message board dedicated to the journey of atypical Parkinsonism. Here, individuals, caregivers, health professionals, and all those connected can share their experiences, both challenging and uplifting. Post your stories, ask questions, or offer words of encouragement. This space is for support, learning, and fostering a community where every message can inspire, comfort, and connect us all.
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Yesterday, our new physiotherapist visited for the first time since taking over Ronwyn’s care. She came to the house to observe the lifting techniques I use to help Ronwyn move between seats and the bed. She also noticed that I have a sash, which I occasionally use to lift Ronwyn from the floor when she has slid down.
Ronwyn has significant strength in her hands and arms. Our current method relies on her gripping the lifter and using her upper body strength to stand up. I believe this is beneficial in helping her maintain her strength.
While the sash can be useful, it is cumbersome to put on and impractical for everyday use. The physiotherapist wants me to use it all the time, but based on my experience, that’s not a realistic solution. Being young, she lacks the hands-on experience and practical knowledge I have, leading her to make assumptions about the best approach. However, experience has shown that her suggested method is not always the most effective. I’ve found this to be a common trend among many healthcare professionals, who often rely on textbook advice rather than practical solutions.
In the face of adversity, I choose hope—always.
Together, we are stronger. Each message here is a beacon of hope, reminding us that we are not alone in this journey with atypical Parkinsonism. Let’s keep the light of support shining.