The session started with a question about ways to help turning over in bed. This led to a more general discussion about stiffness and similar difficulties, with people sharing their experiences.
One member of the group asked about picking out a good mattress for someone with Parkinson’s. The most common suggestion was to find a mattress that you felt good sleeping on. The importance of getting enough sleep was stressed.
Another participant mentioned that her PT had her bend her fingers to help with stiffness. Patrick mentioned that he felt stretching your hands and fingers out as far as possible, would help better with the stiffness.
The topic of exercising or walking barefoot was discussed. Going barefoot, both inside and outside can awaken the peroneal nerve which branches from the sciatic nerve and provides sensation to the front and sides of the legs and to the top of the feet.
Removing the shoes and practicing balance is a common progression for balance therapy. Generally, it is more difficult to exercise barefoot, but it does stimulate the nerves in your feet. And there is some research that indicates this would be beneficial.
Both breathing and swallowing problems are quite common for PWP. Participants offered suggestions to help with these issues. One method has you exhaling 3/4 of your breath, then swallowing, then finish exhaling. Speech difficulties, a muffled voice, garbled words, and running out of breath can be improved also. Overall health issues, oral care, foot care, all the same things that people without Parkinson’s handle, PWP‘s have to address as well, only PWPs always have to kick it up a notch.
April is Parkinson’s Disease awareness month and the group discussed ways that they can help. There are both local and national organizations who are always looking for volunteers and donations. One quite easy way to help is to join one of the reward programs such as Amazon Smile.
Amazon Smile is a website operated by Amazon. It features the same products at the same prices as the standard Amazon site. The only difference is, when you shop on Amazon Smile, the Amazon Smile Foundation will donate 0.5% of the cost of all eligible products to your chosen charity.
Many of these organizations provide support for PWP and their families. There are webinars, presentations, support groups, and resource materials available as well as support groups.
Frequently, dealing with Parkinson’s is more than you and your partner can manage on your own. You may want to consider working with someone in the mental health field, a counselor, a psychologist, or a psychiatrist. (See Minutes from 2/2/22 above for strategies for finding a psychiatrist.)
A number of individuals posed questions to the group. One topic was Covid 19 boosters and whether to have them all the same brand or mixed. A question regarding travel prompted the suggestion that, even if you don’t need a cane, that you take one with you to ward off the crowd. Another point was to make sure that someone on the “staff’ was aware that you have Parkinson’s Disease. This will provide some level of comfort that, in case of a problem, there is a person who will know about it and can help. This led to a discussion regarding the difficulties a Parkinson’s person frequently has when a stay in a hospital is needed. It often can be a very scary thing. Our medications need to be delivered on our schedule, not the nurses, our demeaner may change if we go “off” and confusion may result.
The Parkinson Foundation offers a hospital kit that you can order from their library at
https://www.parkinson.org/pd-library
