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Posted: Thursday, December 3, 2020 5:50 PM
Joined: 8/26/2014
Posts: 1

Hi, I was diagnosed with early onset Parkinson’s (2011), Parkinson’s dementia and Alzheimer’s (2012). I regularly see a movement disorder Neurologist, Psychiatrist and Psychologist. I used to have an extremely high IQ of 195 but over the years this has dropped 60 points to 135 which is still somewhat above average. Because of this, I am still high functioning in ways that are somewhat inconsistent with my other progressions. My personality is still mostly intact at least to my friends and family I don’t see daily. I’ve almost totally lost the ability to remember anything involving short term memory and am unable to form any new long-term ones, but I’m still very aware of what is going on around me at the moment. I was a CPA and was able to do complex math problems in my head, but can no longer do any math, even simple adding and counting.  I can’t make complete sentences at times because I can’t find words and when I write I misspell almost every other word. Thank god for spell checker. Sometimes I get confused about my location and cannot keep a single thought in my head. Multi-tasking is impossible for me. I am able to take care of my personal hygiene but need reminding to take my meds, showers, brush my teeth etc.  I can go for days without doing these things unless reminded to do so. I forget things my wife asks me to take care of almost seconds after being asked and while I used to make notes and used post-it’s, I now forget to even look at them and they have become useless. I voluntarily gave up driving, sold all my firearms, quit shooting at the range and sold all my workshop equipment and tools because they were all potentially dangerous activities. All in all my doctors say I am coping better than any patients that they have had with dementia.


Now the tough part. I am experiencing anxiety and, more troubling, rage in increasing frequency and intensity. This isn’t a ramp up, but like someone flipped a switch. I yell, make unfounded accusations, have very vivid memories of things that never happened, throw and break things. I even demolished my walker so much that there wasn’t a piece left longer than a foot. I have no care for what I throw or break either having tossed cell and house phones my MacBook laptop. I even screwed a board across my bedroom door because I didn’t want to talk or see anyone. My poor wife is beyond stressed and even when she tries to disengage, I refuse to let her, following her around the house. I have taken off at night on my mobility scooter for hours as well. I’m working on all of this with my doctors who are trying to help me. Unfortunately, this is aggravated by PTSD from a totally unrelated incident. My doctors and wife think I have sundowners as this always seems to occur in the evenings. 


Now to the crux if it. I want to figure out ways in which I can better cope with all of this, but all the articles I find are written from the caregiver’s perspective. Lists of things I can do to help me wind down on my own are just nonexistent online…. Any thoughts would really would really be appreciated.  Thanks 

Iris L.
Posted: Friday, December 4, 2020 1:14 AM
Joined: 12/15/2011
Posts: 18057

Welcome Duster.  One of our emeritus members, Alan in Colorado who was himself a psychologist, warned us that stress and anxiety reduce our cognition by HALF!  This was a wake-up call to me.  I resolved to do everything I could to get stress out of my life.  This was hard, because we Americans seem to relish having the "rush" of stress, even though people always talk about how stress isn't good for us.  

PWDs (persons with dementia) are like old LPs, living in a 33 1/3 rpm world, while the rest of the world rolls along at 78 rpms.  The level of engagement and interaction that a PWD is functional in is too slow and boring for others in a household.  You have to have consistency in your daily life, with no ups snd downs.  This is what I have found for myself.  

I also was taught a couple of stress relief measures.  The first is deep breathing.  The other is progressive muscle relaxation.  They worked a lot in the beginning and still work if I need them.

Caregivers rely on medications to maintain a sense of calm.  I suggest, if health permits, a regular routine of vigorous exercise.  Enough exercise to tire you out.

I avoid stimulating television shows, such as all news, cop shows and the like, anything disturbing or negative or prone to eliciting resentful feelings.  Mostly I watch three comedy shows and an ocasional classic movie.  My recent movie was Lilies of the Field with Sidney Poitier.

I keep in mind to maintain a calm demeanor.  Uncontrolled aggression can be a reason for placement into a care facility.  PWDs may do better, because the environment is more controlled.  As Alz+ has told us many times, managing the environment is the treatment for dementia.  

A sudden onset of aggression or unusual behavior may be caused by a silent urinary tract infection.  An evaluation by a doctor or urgent care or emergency room may be warranted.  

A review of medications is warranted because aggression might be a side effect; side effects can occur even after being on the same medication for years.

If your current doctors are stumped and you don't have a UTI, you might consult a geriatric psychiatrist.  They are the specialists who know about medicstions for aggression in PWDs.

There are a lot posts about sundowning.  Keep the lights on around the house.  

This is all I can write now.  Keep searching.  I believe there is a solution to your problems, Duster.


Michael Ellenbogen
Posted: Friday, December 4, 2020 8:08 AM
Joined: 11/30/2011
Posts: 4324

Thanks so much for your honesty with the issues you are having, While I don’t have all the answers I may be able to help you understand some things if you would like to have a conversation together with your spouse. I think I can sed some light on some of the issues. I sent you a private connection request if you would like to connect. 

Sharon Buck
Posted: Saturday, December 19, 2020 8:55 AM
Joined: 12/19/2020
Posts: 5

Sweetie I understand the rage. I also have PTSD my symptoms aren't as severe as yours yet but that rage set in a few months ago I think. Mine happens in the morning usually, I cannot control it at all. My poor Son, I follow him around the house as well during an episode. It went away for about a week but has returned. I'm trying to remember if I did anything differently that may have stopped it. I was a nurse caring specifically for Dementia and Alzheimers patients. I also cared for a young woman who had Parkinsons .  I tried CBD oil for the rage, just a fourth of a dropper daily but I'm not sure if that has made a difference. I dont get much sleep and all of it is broken. Are you having sleep problems too?
Sharon Buck
Posted: Saturday, December 19, 2020 8:58 AM
Joined: 12/19/2020
Posts: 5

You are very wise. I want to thank you because I'm having rage issues as well


Posted: Sunday, December 27, 2020 10:33 PM
Joined: 12/27/2020
Posts: 1


Hello. I am new. I also have PTSD and also in the morning and hard to control. It is nice to be able to know that there is someone going through the same thing.  It's worse dealing with that then forgetting things so quickly.

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