I’ve found myself here again.. This place of transition and question. I see my peers making “good” choices for their future. I see them properly planning and executing their lives perfectly. Then I look at myself and I’m reminded of the burden of Parkisons Disease.
To be specific this post is going to cover the matter of cognition and planning execution. Two things that have drastically changed since my journey with PD began and even more since the cancer treatments of last year. As most of you know my experience with this disorder has been pretty miserable. It’s been a constant ebb and flow of medication and personal challenges.
Most recently I learned a lesson in life and in Parkinson’s disease. I will probably never trust a lover to be my professional and legal caregiver. As a person with cognitive issues I’ve reached a point where I can no longer trust my judgement. Even this last time. We did months on the phone, a month in transit, vacation style some get to know you time and still I failed at picking the correct human to do the job. This time I’m at risk of losing the most precious things I own. My son, dead grandmother and father’s things. My medical and fincial records too are being held against my will and I ended up homeless. So as a measure of protection I’m no longer dating anyone and I’m no longer going to be using friends or family member as a carer. It creates to much tension and when things go South everyone loses. The carer loses the job and the client (me) loses a friend and a caregiver. So no more. Cheers to those of you who made it work, I can’t. I’m going to give up trying on this endevour.
Parkisons disease disables the brains ability to regulate ones autonomic systems,. Arm swing, gait, loss of voice control, fascial muscle and throat control as well as diaphragm and some tummy issues. Also a whole batch if untreatable anxiety and depression.
Now I think is a good time segway into the Agnosia and my inability to put one and one together. Agonsia basically takes the pathways in between the “plans and goals” and erases the clear path from one event to the next. It also makes it near impossible to read a person’s face. Which means in times of heated conversation or debate I have no idea what is to much or to harsh of statement and thusly making me seem “mean” or unkind” when in reality I’m simply not perceiving the world in same fashion a person seeing and reacting to the same/similar circumstances or behavioral events. Sadly unless you know the person with Parkisons then it’s easy just assume that the person is a “normal” state of emotional mind. Which infact couldn’t be further from the truth. Chances are you and this PWP have no idea what’s expected of eachother.
In closing as you deal with or encounter PWP please either take a moment to educate yourself or ask lots of questions. Most disabled adults never want conflict or drama. It’s usually their biggest trigger of symptoms
I know for me it is and millions of other people with Parkisons disease. So behind and compassionate with those with any illness invisible or otherwise. I’ll leave you all with this one last thought. What would you do if your spouse or partner (s) disability needed you to sacrifice for their quality of life to be even close to the measure it used to be. Think hard and deep because I’ve gone through 4 really good, strong people who where getting paid and personally compensated for their time and efforts. So double check your motives if they are not b cause you simply care for the person and you do what you do out of love.. Don’t do it. Steer clear because you’re not ready for the level of dedication and compassion it takes to be a caregiver.
Much love and Light to all.
Benjamin.
Expressions of my life - An evolution of art. 