My Brother ~ I just need to express my concerns!
When he was twenty one years old he managed to roll his vehicle in the mine where he worked and by all rights should have been killed as his head got squashed between the rolling vehicle and the road.
He had trauma to the head and was airlifted to a proper hospital.
Little did we know back then that this would come back and haunt him decades later for at the young age of forty two he started to develop the symptoms, the slight tremor, the stare, the dragging foot.
His wife divorced him.
As the years rolled on we could see his quality of life deteriorate, he went to see a neurologist for confirmation that he had PD. I managed to take him to a friend in a neighbouring town who knew a doctor who had the age of seventy had DBS.
What a revelation, to hear this man full of life, explaining that he was bedridden, his wife having to take care of him as if he was an infant. He eventually decided to have the DBS op and went onto explain that two days afterwards once the brain swelling had went down, they "switched" him on and told him to walk. He got up and crossed the room with ease as they did a few adjustments, the following week he was back in his car driving around.
This gave my brother hope, but we had to wait.
However nobody told us about the prevalence of heart issue that get's diagnosed with sixty percent of PD sufferers.
Two weeks ago, I was called to my brother's house, who is now forty eight, he was lucky that his son was there as he had blacked out and hit his head on the wall and swallowed his tongue, when I arrived he was on his back and unresponsive, turning a black blue colour..... I managed to clear his airways and performed CPR and got his stabilized, He spent the next four days back in hospital recovering.
Ironically he had just been discharged the morning he had fallen as three days prior to this he had locked leg syndrome and managed to get his shoulder dislocated.
Anyhow, yesterday morning's drama was he had been having chest and arm pains for three days and stubbornly refused to inform anyone.... when I found out, I forced him to go for an ecg, which came back all right, However the doctor said his heart was enlarging.
My brother does not want to accept what is happening to him and for all those years refused to inform his two children (adults) what was happening to him. In addition he has done no prep for what is coming his way. No research, No preparing his home, nothing... no research....
I went into overdrive yesterday when I heard about the heart and was mortified to read the correlation between heart issues and PD sufferers. This explained his fatigue, chest pains and blackouts and it will only get worse, his heart might kill him before the PD does.
My wife is supporting me, but it is frustrating that my brother does not want to accept what is happening.....
I post on here as I live in a very remote part of the world and selfishly feel that it helps me to share what is racing through my mind.....
I thank you for letting me share this....
Cheers
- I appreciate you opening up about your experience here. What you've detailed here sounds incredibly difficult. His reluctance to accept the state of his health does sound frustrating. Venting here is not selfish at all. We're glad to be here for folks who just need to let it out. I did want to share an article with you that talks about ways to help a loved one who is refusing care: https://parkinsonsdisease.net/caregiver/tips-caregiving-refuses-care. I hope this helps provide some guidance. Thanks again for sharing. - Chris, ParkinsonsDisease.net Team Morning Chris, Thanks for your words. I have read the link and yes do indeed try to follow those basic principals. Before interacting with my brother, I take a deep breath and remind myself that he must be tormented inside and that I will never be able to understand how frustrated he must be.
I have been in my own business for almost three decades, when a problem arises, I tend to overthink it, come up with a plan and solve it, Always, there is always a solution.
My brother has worked all his life for a mining company that has made him a number and provided for him. Like a robot he is willing to sit back and wait for the solution to come to him, hence him not "preparing" for the last three years.
This I find extremely frustrating and as bad as it sounds have resigned myself to the fact that this PD is going to kill him.
The saying, "For I am my brother's keeper", springs to mind
But this is one problem that has no solution, for once in my life I cannot fix this.
Thanks for the platform.....
What a powerful message. I know that denial can be overcome but it can take a long time and sometimes does not happen during a period when a person could improve. I am hopeful your brother will not give up. I hope, too, that you know you’re doing all you can. I get frustrated watching people I know give up. I can imagine it’s harder when it’s a family member. I also know PD symptoms at some point may unleash a “new and difficult “ personality in persons who were not like that before. I saw one dear friend become someone none of us recognized. We did what we could to support him and his family. Kind regards as you navigate these times with your brother. ~Lorraine, parkinsonsdisease.net moderator
