For The First Time My Head Was Hanging Down


sad-faced cat

Today was the day that Al and I went back to the doctor for a recheck on his new medications he had been put on last Monday, and to discuss the numerous tests that had been done on him in the ER on Friday and last weeks labs that had been drawn.

We walked in and waited for a few moments and then Al’s name was called. He was weighed and now he had lost the four pounds he had gained and even lost two more pounds, making this the lowest he has ever weighed.

We then went to our familiar little room where the doctor comes to pay his visit and give you his infinite wisdom. Al’s vitals were checked and then the doc came in and sat down and was all smiley.

I had a list of things that the home health care nurse had given me to ask, so I started the conversation first. The doc didn’t really respond too much, did a lot of smiling, made one adjustment from what the nurse had stated. He also said that Al would be checked for cancer the first week of December on his enlarged prostate.

Then the room became silent. It was like when you are in a group of strangers, and all the surface talk has been played out, then what, silence, until someone speaks. This was the way it was here also, then the doctor spoke.

He said that he was very shocked that the test results did not show that Al suffered from something else besides Parkinson’s Disease. He said that he was so sure that Al could not be in this much pain from this illness, but he was wrong. All the labs came back negative from every kind of bug or arthritis or anything. The only thing that proved him wrong for sure besides the tests, was the brain scan that the hospital had shown.

Al’s brain is consumed with Parkinson’s, and yes he is suffering. The wiring in his brain is being cut off from the death of cells. He said that whatever we wanted to do , it was fine with him anymore, just tell him what would make us happy.

I looked at him and said nothing. Al said what did he say?, and I said, the doctor wants you to be happy. Al said, oh ok. For now we have postponed the Pain Clinic appointment, and are going to continue with his new medications, since it has taken away some of the tears and talks of death. Other than that, there is nothing.

As we walked out, my head was low just like Al always carries his. Al didn’t get anything the doctor said, and I understood too much.

66 thoughts on “For The First Time My Head Was Hanging Down

  1. sorry to say this has been one of the saddest posts i have read from you. my dr. is so different and i would never return to a dr. who didn’t show interest and support of my voyage. i know in my heart i never treated a patient in that way. maybe my years of nursing made a difference, i have certainly met doctors who behaved this way. my heart goes out to you. sometimes i am not sure if i had a choice i would choose to know there is no hope of getting better. that must be so heartbreaking for you.

    wishing you peace and light in your life.

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    • i think they have taken away some of the sourness of the mind, which ends up lifting his spirits, and some of his pain. i would say that he is about 30% better spirited,which is a good thing to me! thank you for being here with me

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  2. Not a doctor … but maybe it’s all in Al’s mind – I’m sure he feels pain – strange all of it, but if they have done tests, but pain must come from somewhere – it’s a bit like for 10-15 years ago when you had pain and nothing showed on the X-ray it was nothing wrong, but that has changed to some extends today. Maybe you should go for a second opinion with another clinic or doctor. I would insist on the pain clinic anyhow. Because if he feels pain – there must be something that causes it if it’s not mentally related. Don’t give up – we have to question doctors, they are not God anymore.

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    • receiving all of the test results now proves beyond a doubt, that the pain is coming from the Parkinson’s. The wires running from the brain to the body parts are shorted out, and when they do this, you experience strong pain, which is what he is doing. i was hoping that there was something else, that could be found, an answer to all of his pain, but now we know the truth, it is only Parkinson’s. PD patients suffer through variable amounts of pain and since Al’s entire brain has been affected by this disease, this is why he is always in so much pain. Nothing is working right in his head

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  3. Terry, you and Al are continually in my prayers. Its kind of a blessing that Al didn’t follow the doctor’s comments but what a heavy burden to add to your already heavy share. When the doctor has done tests looking for other medical issues, I find myself hoping for a diagnosis of something …faster, maybe? There are alot of e-hugs being sent to you today, not only from me but all those other folks who follow you. I hope you can feel them.

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    • you know………that was my hope too. maybe there is something else, maybe the PD is not all that bad, sometimes reality takes a while to sink in, and i think this is where i am at today

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  4. My heart and my thoughts go out to you Terry. While you know the PD is worsening …there is also the ‘unknown’, Please …as you basically have been doing take one day at a time. It is really a blessing that Al does not understand….Take care..Prayers as always…Diane

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  5. I’m so sorry for you both. The one day at a time philosophy is really the best you can do…. maybe even one MOMENT at a time. It is so easy to become overwhelmed. Be gentle with yourself.

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    • i am doing my best to not think about the tomorrows. it will only make things build up faster than they already are. thank you for your supportive comment. i very much appreciate your friendship

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  6. My heart bleeds for you. I sense the helplessness that is such a familiar feeling. Have you considered Palliative Care such as Hospice? They cannot change the prognosis but can certainly help with pain control. I have found there to be a huge difference between Pain Clinics and palliative Care. Palliative Care may be far more beneficial at this stage. It is a totally different discipline that focuses on quality of life. Good luck! It is a terrible journey for both of you.

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      • My 38 year old daughter is terminally ill. Since Hospice started coming in she has QUALITY of life. It is so amazing that she can now spend constructive time with her boys. I had to really fight very hard to get Hospice to accept Vic as a patient as they only take in AIDS and Cancer patients in South Africa. Wishing you great strength.

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      • thank you. how did you convince hospice? they keep telling me that Parkinson’s has no ending date, so they are refusing
        I am sorry about your daughter, but am very grateful that she has hospice and a better quality of life

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      • I got the Pain Clinic to write a motivation and I got two independent doctors to exam her and write motivations. I phoned EVERY day. I wrote to them and quoted their “Palliative Care” philosophy to them.
        “World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (WHO 2002)”
        Parkinsons has no cure and is therefore a TERMINAL DISEASE. Palliative Care is a basic human right!

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  7. Terry, there is really nothing much to say about this except I sincerely hope that what will be will be as painless as possible for Al. Al’s situation is awful, but if you can get him home, every little thing that he has enjoyed will make a big difference to his last days. These small things are really all he has left now, so try to get them to him. You have my deepest sympathy.

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    • i try to get him everything that i can afford. his love of his life are coca cola items and vintage car toys. when i can get out i try to get at least one. you are right, he needs to have his loves around him. thank you so much for this wonderfully kind remark

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  8. Oh, I wish I was closer…I would give you some of my time…to just sit and talk and have a cup of coffee…and let you smoke your cigarettes…just like my sister does that has a similar situation…
    We’d laugh about silly things…cry when the tears came…and give Al something to smile about…mkg

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    • spending time with you once again, brings a smile to my face. you are calm and so nice, that you bring a soothing atmosphere that surrounds me. one of these days we shall see each other again. hugs

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