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Topic Thoughts From My Perspective On My PWP Go to previous topic Go to next topic Go to higher level

By Cathy On 2017.10.27 12:23
He paces without stopping. Stopping to rest and sit awhile are no longer his to do. He is constantly aware of his body and the pain, because the pain is always there.
He is trapped in his own body; tormented night and day without relief; even for a moment in time.
He questions why him...why doesn't God answer his prayers. I wish I knew what to say in response, but I don't, because I question the same.
He wants to die. He says this often to me and to others, that he wishes God would take him home. Torture comes in many forms and he is tortured in his mind, his body and within the walls of pain that shroud his existence. Please help me do this he pleads, crying that he is ready to be free of his pain. He is consumed in the lonely boundaries of this disease; constantly battling the unknown enemy within his body. Lonely, because others only see the visible signs of this disease and don't understand why he is tormented, emotional, fatigued and sad. They don't understand that he is consumed by pain day and night; consumed in thoughts of nothing but the pain day after day, night after night and what now, seems to be the ending to the unending. He is no longer the happy man we all knew and loved. In many ways, he is a stranger to himself and to those who love him. How do you cope with the loss of the person you were before the pain took over? How do I convince him to focus on the good in his life; the blessings that have brought us to where we are today . More days than not, he has the emotional personality of a baby in distress. He cries for the loss of who he was before this disease. He cries from the relentless pain he must endure and he cries because he feels very grateful for the love and care that he has received from his family. Even his beloved Portugal where we are now, has failed to ignite the joy of being home in the land that he longed to be in. We know this will be his last journey to the land of his birth, where all of his brothers and sisters live, because the journey here from the USA was HELL for both of us. He knows this is the final goodbye and yet, he can't enjoy his time here. So sad. Where are his smiles; where is his laughter, where is his joy? So fleeting are the moments of days in our past, where we took for granted these simple emotions.
Now, his emotions of happiness and joy are rare. He moves through the day as if his feet and legs are encased in stone..sometimes, even frozen for moments in time. I watch him enter the house; returning from his morning and/or evening walk and he appears to be in slow motion. One foot at a time...stop...turn...try again. How difficult it must be for him to navigate down this path that life has given him....it is difficult for me too. I have lost the man I married to this horrible disease that steals and kills.

By LOHENGR1N On 2017.10.28 17:57
There is a lot going on here in this posting! From your description it sounds like a Parkinson's plus syndrome or Parkinson's syndrome. These are neurological diseases that share some P.D. symptoms but present other symptoms along with Parkinson's. These are treated differently and do not respond to typical P.D. medications. They maybe start out looking like P.D. but progress differently as the disease encompasses different parts of the brain. At the start they look like P.D. but your Neurologist or Movement Disorder Specialist can diagnose them as time goes on. Please see His Neurologist as soon as possible to make sure he gets the proper diagnosis, medication and treatment.

By sara hatch On 2017.11.01 15:41
I wonder why he is not on some kind of pain med or is he???????
There are definite ways to manage pain and certainly he should be on them.
He also sounds very depressed as I am sure he is. My heart goes out to both of you and I pray that you can find some kind of medication that will give him some relief.

By Cathy On 2017.11.02 05:36
Thank you for your kind words and encouragement. I have read many of the posts from this group and gratefully realize, that we are not alone. I realized as well from this forum , that our struggles are also with his doctors. We return to the states next week and I feel empowered with knowledge and that going forward, our concerns and fears will be communicated and addressed differently with his doctors. My husband is on pain meds as needed and has been prescribed antidepressants; along with high BP meds and of course, his PD meds. I've learned from this group too, that I need to be proactive and prepare myself for the future; whatever that may be. Blessings to everyone!

By LOHENGR1N On 2017.11.02 08:51
Just a quick word on pain med's many can make our Parkinson's symptoms worse. Always check with the Neurologist. A heads up to on over the counter medicines read the fine print many, many cold medicines warn against taking if one has P.D.


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