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.
Dark eyes grow strong as the fire rages in her in brain. She’s lost a drift of bones and blood from another soul lost to her consuption of the darkness. Force fed to her from such a tender age. The blending of families and friends taking their leave of her time and again. Rage and fear so clear on her face, as the new normal set in.
So many years later, so many hearts broken, confused and destroyed by the deeds of your past. I whisper with the angels in hopes you find real peace of mind and the steady of faith like those whom truly shine of the light you crave so dearly. I gave you everything I had. My heart , my belongings and my body and soul. None of which could silenced the demons that cry from deepths of your mind and body. Your heart is to damaged for my damaged soul to heal. So now…. Now what do we do as this life’s glue has cemented me and you. What dear called angel, sugar pea of love, betrayal and dreams gone wrong in the darkness of the fears raging in the depth of our souls. Don’t be remembered as the destroyer of worlds but the giver of life and new perspective. Be the renewed gift of life the grandmothers thought you to be. All this for such sad dark eyes growing darker every day. Be the light you said you were, be the light I’ve seen the those dark eyes.
I’m being kicked out of the house in Bisbee Arizona by my would be caregiver. She’s given me zero notice to move ALL OF MY BELONGINGS FROM HER HOME. I’m in shock and not sure how to proceed. My true friends in Salem and Portland have rallied behind me and provided me with a ticket home on Friday the 28th. I’ll be staying in Silverton Oregon with a fellow cancer buddy and his wife until I move out to th farm house in Sheridan Oregon. If anyone feels generous and wishes to help, please find my PayPal link. I’m at a loss for words. I thought we were working through the transition but I was wrong. Greatly apparently I’ve been triggering miss Paula The entire time we’ve been back in Bisbee Arizona. Despite a great weekend and last week. She suffers from PTSD and apparently I’ve been “that guy” so it’s time for me to go. Very scared, very insecure. I’ve never been so far away and had someone be so unfortunately cruel. Simply blows my mind. Because even if I hated you I would still treat a person better than I’m being treated. Fuck I even gave my last bad caregiver a month to have her things. Me I e been given less than 24 hrs to move stuff it took me 10 days to pack. Abuse if the disabled and if anyone is a mandatory reporter then here you go. Abuse of the disabled at it’s finest. I thought things were fine. Stressful but moving forward… I was wrong and sadly will be paying with my very life force. Why you ask so serious????? I have Parkisons disease and for those of you who don’t understand how actually serious this is I’m sorry for you, it must be hard and very confusing to watch me go through this. And all the bullshit Parkisons disease has put me through.
Please pray I make it home safely. My house in Salem is no longer mine and I’ll be staying with friends until I can get a real caregiver and place for me to grow old in. I love and miss you all dearly. I know you have your own troubles, life isn’t just punishing me I know. To all of you who have been through this I’m sorry for your trouble. I’ve never been or felt so fucked over in my life this is a while new level of human filth and disconnection for me. I never knew ppl.coukd be so cruel.
Goodbye for now. If the good Lord and mother EarthGia grant me life and strength to continue then I shall. If not. I love you all so much and thank you for seeing this far. I have no son(he lives,but not with any contact with me) or family to go home to and a small number of friends who understand my heart is good and never would do harm. But it’s time for me to find a place to rest, to paint and cry for a long time. I’ve been fooled by people more broken by me for the last Time. My good heart is broken now. I don’t trust in God,in man or woman alike. My feels have been smashed for th last time. I can no longer trust my own judgement and I seem to keep trusting the wrong people. I’ll be back in Oregon on Friday th 28th 5 something pm in PDX
My heart is done. My love for life is fading and I live in physical and mental pain every single day. Pain lvl 7-8 but modern science only wants me to take narcotics. I refuse to!!!! Mmj or nothing. Anyhow that not related. Wish me luck and I hope that I can see you on the other side of this.
Goodbye for now.
Benjamin M Prewitt.
PS. If my mom or I can x family read this now is to to step up if you ever really cared for me.