Day by Day with Parkinson's and Peripheral Neuropathy: From Care Giver to Patient

Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Tuesday, September 26, 2006

From Care Giver to Patient - A Troubling Transition

Both my DH and I were upset yesterday, getting a glimpse of what I'm going to be like when the Parkinson's symptoms are too extreme for the medicines to be able to control them all. I felt a hundred years old and had visions of just how dependent on someone else's help I'm going to be.

I've always been the care giver, so it's hard to depend on someone else to put the time into research and learning all about the disease the way I would. My DH is just not the type to read about illnesses. He can't stand going to doctors and gets squeemish when blood is drawn.

He's great at home care, really the best, but he's not so good yet about keeping medical terms straight and understanding doctor's jargon and questioning doctors. This all concerns me, because he's always left all this up to me, and now he's going to have to take over at some point. He has been going back with me to see the Neurologist, and he has been contributing to the discussion, so he's really trying. I thank God that it looks like we have enough time for him to gradually increase his skills in this part of care giving.

Labels: care giving

6 Comments:

At 9/27/2006 6:47 AM , Ripley said...

I`m sure your DH will be fine, he now has an important role to play and I am certain he can step up to the plate and accomplish it. He will notice things you may not have noticed and can tell your specialist about changes etc you may have disregarded. I rely on my wife to inform the specialist of anything she thinks is important as I have a tendency of not noticing anything as its too subtle for me. She also writes a list of questions before we go so she doesnt have to rely on forgetful me to ask anything.
He`ll be fine...trust me
Tim
At 9/27/2006 7:06 AM , Dirty Butter said...

I'm certainly going to have faith in him that he will grow into the role, Tim. He's already the most kind hearted hubby anyone could ask for, and he'd do anything for me. The medical part just happens to be something he's not naturally good at. He'll have time to learn, though, and he's certainly motivated.

This blog really is a personal journal, kind of an open diary, so it means something to me that you've waded through the personal stuff. I really do appreciate your words of encouragement.
At 9/27/2006 2:26 PM , Ruth said...

Just checking in - and sad to see that you're struggling with side effects and not feeling well. Those nutritional ideas from Jackie look helpful. I will keep you in my prayers as always. Please know I am around.
At 9/27/2006 2:40 PM , Dirty Butter said...

Thank you, Ruth, for your prayers and your friendship. The Lodosyn has helped a lot with the nausea and my tummy has almost gotten back to normal.
At 9/28/2006 11:23 AM , Marion said...

I'm so glad you're feeling better, DB.

As another caregiver, I understand how hard it will be to have to take care instead of giving it.

I'll be thinking of you!
At 9/28/2006 11:36 AM , Dirty Butter said...

It's quite a change in mindset, Marion, and one I'm not at all comfortable with yet. We're still working out the delicate balance of his not trying to do for me what I can do for myself, and me being willing to ask for help when I need it.