A Framework for Independence and Improved Sleep

Last week, I was contacted by Joe Vosters about his company’s product “Friendly Beds", an innovation designed to assist people with bed mobility problems, including Parkinson’s. The arrival of Joe's email was very timely: quality of sleep is a subject which Deb and I happen to be focused on and prioritizing right now. The critical importance of good sleep with Parkinson’s - and the significant barriers to achieving this - are issues which many people have already asked us to look into. Deb, our Director of Wellness Research, has now uncovered a body of scientific literature which points to the disastrous way broken sleep patterns – disruption of what is called the Circadian rhythm - aggravates Parkinson’s symptoms. We will be writing about this in our articles section, covering how poor sleep has affected me and what we have done to ensure my sleep is now much better.

Back to Joe. Joe sent me some brochures of his Friendly Bed system. I took one look at the design and saw, from my own experience, that this indeed represented an important enabler. What Joe’s modular system aims to do is give people with Parkinson’s more independence by making getting into and out of bed - and also re-positioning in bed - much easier. My experience with these issues is first hand. One of the things I personally still struggle with is getting comfortable in bed – I find it very difficult to turn over in the night – and getting out of bed in the middle of the night and in the mornings when my dopamine levels are at a low point can be very difficult. It can be a real effort just to sit up, swing my legs over the side and push myself into a standing position.

In fact, I got into a small situation of mental anguish over this just recently. I had a urinary problem (common with Parkinson's) and kept needing to visit the bathroom. At night, because getting out of bed takes effort and some time, this became a point of anxiety in itself and started to become of an obsessive nature, which lead to me feeling like I need to urinate even more! Luckily I have acquired the cognitive tools to have been able to address this before it go it out of hand, but I can see how the inability to get out of bed can very quickly become, in of itself, a source of great anxiety. The bed, instead of being a haven for rest, becomes a frightening place. The impacts of such a negative feedback cycle on the symptoms can be profound according to Deb’s research - yet another example of the vicious cycles PwP can find themselves in.

[Addendum: this morning, in self-experimenting as to whether I can now lower my medication levels, for the first time I found myself completely unable to get up unassisted. This was indeed a very frightening experience and not one I wish to repeat].

We must also not forget the impact of these issues on the partners of PwP. Their health and ability to cope is also impacted hugely by broken sleep patterns too, of course. Being kept awake by the constant fidgeting of the PwP or having to assist them with getting out of bed once of more in the night affects their physical and mental wellbeing. This reduced ability to cope then impacts on the PwP during the day, from the partner being more irritable, for example, to not having the energy or drive to prepare healthy, nutritional meals for the PwP. Negative feedback cycles again!

So when I saw Joe’s brochure, I immediately understood what his innovative product represented for people affected by Parkinson’s. I arranged to telephone to find out more. Joe was very friendly and told me about the product and how beneficial his customers have found it for living with PD. Joe tells me the frame is made from sturdy steel and hardly bends, can be erected by any handy person with only about a dozen screws and is modular. However, Joe is very ethical about who he sells to and says the system is not suitable for people with dementia or those with no upper body strength. He ships the system within the US and Canada, but also gets enquiries from around the world and can supply it outside North America, provided the customer is prepared to pay for shipping. Joe argues his system is very cost effective too, especially in the US, due to PwP being able to remain independent and at home for much longer, ameliorating the need and expense of having to relocate to an assisted living home.

Joe adds: "a person with PD who can help themselves has greater independence, self-esteem, and chance to build strength. I should mention the reduced risk of injury to the caregiver. Reduced strain to the caregiver is a huge benefit as a serious caregiver injury may cause everything to crash in the home environment."

Given it's potential benefits, I have agreed to add Friendly Beds to our "Recipe for Recovery" listing. If you would like more information please contact Joe via his website. If you do, mention you came across the product via Out-Thinking Parkinson's, as Joe says in return for featuring it in our Resources, he will provide a special discount. However, if you do try this as an intervention, please do also feedback how it works out for you.