What follows is excerpts from a VERY, VERY LONG blog entry from ‘Out- Thinking Parkinson’s’ Detailing how Dr Gary Sharpe, Phd became terribly ill, poisoned by his PD medications, and the ensuing journey, hospitalization, failures from medical personnel, diagnosis, treatments and subsequent relocation. (As a pwp, I found Dr. Sharpe’s detailed story very fascinating and insightful and thus, I encourage readers to click on the link at the end of this blog entry.)
“During my stint in hospital, I had plenty of time to think, and gather experiences and insights, about what my care needs actually are now, which I had somewhat buried my head in the sand about before. As perhaps these needs will go for other people with PD more generally, I have therefore sought to spell these out here in case they help fellow people affected by PD start considering their own needs too.”
The overarching theme of these needs is “Feeling Safe”.
1. I realized from being on the hospital ward that having people around me 24/7 is actually very important. This was confirmed to me during a week when I was isolated in a side-room off the ward, due to an episode of diarrhea. I felt much more vulnerable, much more anxious, and much more depressed than when I was on the ward. Indeed, I realized that when I was living at home with my parents, I would feel very unsafe if they went out and left me alone even for a couple hours – I would literally become scared stiff and my PD drugs were much less likely to work. This was also underlined in a moment of epiphany during a counselling session with a hospital mental health team member while in isolation. I burst into tears and cried “I’m so lonely; I’m so scared to be on my own”.
2. I need someone else to take control of my medicine, since if I am left to self-medicate, I will once again start self-poisoning and over-dosing. I know I will be unable to resist reaching for extra drugs whenever I feel fearful enough, am having a bad “off” period, or if I panic, and the rising drug burden cycle would begin again. I need this external control to be reliable enough such that the medicine will be delivered reliably on time, due to my massive anxieties around this. The complex medicine regime I have on leaving hospital, with both scheduled and “when-needed” PD pills and injections and painkillers (I’m still on morphine, but am trying to wean myself off it) means that someone would need to be on hand virtually every hour of the day.
3. I require good, nutritious food preparing for me and need to get back to, and then maintain, a healthy weight. This includes encouragement to eat, and reassurance to that I shouldn’t feel belittled in the instances I need assisted feeding when I am completely “off” during meal times.
4. I need caregiving by people who have a good understanding of the disease and my condition, and who don’t ignore, mock or disbelieve me – implicating that it is “all in my head”, which occurred a lot in the hospital, for example, is anathema to me and causes my symptoms to increase. I need knowledgable external oversight and monitoring of my physical and mental health, intervention if things start to go awry again, and reassurance and a calming voice when I frequently get over-anxious.
5. I need to be allowed and encouraged to move around and exercise/stretch while “off” to prevent rapid disease progression, not to be confined to bed or bedroom for fear that I might fall or freeze, yet be quietly watched over when I do try to mobilize.
6. I need the opportunity, encouragement and any required help to engage in plenty of social activities, to go outside and further afield, and to meet new people, without having to schedule such opportunities. I need caring oversight to ensure I don’t social isolate myself nor become agoraphobic again.
7. I need the opportunity, encouragement and any required help to engage in plenty of stress relieving and management activities, such as arts and crafts, singing, dance and music therapy, puzzles, etc.