Oddly I find the harder I try to live a better life, to give more and need less. That there are days when all I can see is darkness of this disorder. All I feel is the lose of the things,people, and memories, some people and Parkisons disease has stolen from me. There have been times in my life when the universe has shown me its true gifts in life and others when it’s stripped me to bone and laughed as I failed. My brain incapable of creating the chemical that comes with making a stable, strong choice in life… Gone, unable to see through the Agnosia and lingering damage done from chemotherapy and radiation treatments directly to my head and neck. Today I haven’t seen a flower worth remembering. Today is just one of those days.
One of those days where you just have to shed tears of sorrow, to allow one’s self to truly grieve for our perspective loses and emotional suffering. Today the world seems cold and brutal.
Such a struggle over the years to her. Keep her safe, dry and warm. Keep her watered and groomed in every fashion. Over the years I’ve found since you’ve been gone I can’t do it all I can’t make things right and I can’t continue down this path of destruction any longer. I’m setting my soul free as youve set me.
No longer will this burden be mine. This tree has grown old and cold. Brittle to the touch and tired. A constant drift wishing only if peace and security. For the love and kindness of days gone by. As we’ve grown older and more cynical we cling to the beliefs that make us comfortable in our life choices. Well what if ones wrong? I’ve learned and am learning to be open again, admit my faults when confronted with them. I am human I am guilty of human faults.
They drip like old paint from rusted can, thin and translucent. I am tired of always feeling like it’s a set back instead of a foot forward. Now this house those memories and times will fade away like all the bitter Sweet tears of the last five years….. Kismit the say and much to my dismay tis true, everything you do will come back at you.
*****Just writing, not thinking or drinking. Just writing to work out th demons. Yes the house is being sold and everyone will be done and gone. Fairyland is just a memory. I’m not what the future holds for me in this life. I keep on being stripped of all my worldly possessions, now including most of my clothes, furniture and a lifetime of memories. I’m fearful of what the universe has in store for a man with nothing but good intentions and a broken soul. I guess we shall see. 12-13-2018 is end date, I shall be gone far prior. Much love and light.
Bits and Pieces: Such wind swept nights of terror you gave me as the desert night turned to day.
I lay awake in my bunk fearing the life that has been forced upon me once again. Unfamiliar places and faces chase my thoughts and blind my vision as I give the hats I used to wear away.
No more can these fingers play. My heart is done for this day and many more to come. I have nothing to give for I have become numb. The desert is hard place, I’ve been told unforgiving and to this must agree. For it took bits and pieces of you and bits and pieces of me.
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.