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Didi

How often do you see you neuro? What questions to ask?

29 posts in this topic

Awhile ago a doctor who has advanced PD gave a excellent speech.I have been to quite a few nerologists especialy MDS now and somewhat disappointed.

I know what it feels like to be walking fine on minute and stumbling the next.For me turns definitly bring it on alot.

Im thinking now about having the doctor who has advanced pd take over my care.

What better choice wouldn't you say.

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I think that is a great idea johnnys, no one can understand what it is like than another person with PD!  We who don't have PD read, listen and watch, but alas we cannot feel what you feel.

You have nothing to loose and everything to gain, good luck!

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Likewise, no one can understand the pain experienced by the care giver unless he has gone thru it. I was the primary care giver to my son who was head injured in an auto accident ..... I would have taken his pain in a heart beat...it is harder to watch a loved one than to carry the burden ..... Especially when they emotionally are struggling......so I REALLY do appreciate the participation of the care givers in the forum, to remind us to look outside ourselves and recognize the impact PD has on those we love.

 

PD has a way of consuming the senses....and it is so easy to become self absorbed....and that is my greatest fear....so again, Didi, Trying Hard, Miracleseeker, and all the others....thank you for reminding us of the essential partnership between PWP and their care givers....we can never ever sufficiently thank you enuf....and you never get adequate recognition.....in this life......:)

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Thank you, Trying Hard and New Normal, and everyone else's comments.

To New Normal: I'm not sure what you meant about me discrediting Dr.'s or test results -- can't quite figure out what comment gave that impression -- I had no problems at all with our current neuro until he got offended about my asking to see an MDS. Even then, I understand his perspective, he is an older doc-- feels every Doc has his own style of treating PD, and was not interested in input from an MDS. We were accepting of that, but when I asked if he had treated PD patients as young as my husband he admitted -- very few, "it's rare" he answered. That's when we decided we'd like to see an MDS.  I don't know if that is what you mean about discrediting him -- I sure didn't mean to - -he seems like a fine doc -- we'd just like someone with a little more experience treating younger PD patients.

 

As for my husband already knowing when he isn't walking correctly - -I beg to differ a little. I was the one who noticed my husband's gait issues and bradykinesia, long before he did -- probably a year or more ago. But it took almost 4-5 months for me to talk to him about it, and then he started realizing it himself. Likewise - -my husband can tell when I am ready to have a flare, before I can, he can also tell me if I am going to have a seizure at night( I usually have them when falling asleep) It always amazed me how he was more in tune with my body than I was. He tells me he can see it in my eyes. Truly, when you are married -- "The 2 shall become 1"

 

Your insights into being the caregiver vs. being the one cared for are discerning and come from true understanding. I am so sorry for your son, and what you and your family must have been through. I am sure you would have taken his pain in a heartbeat. Honestly, I have had my moments, of questioning the Lord as to why both of us had to succumb to illness a few years apart, at relatively young ages. But everything happens for a reason, and we have both learned so much. Now we have both seen things from both perspectives(the one who is ill and the caregiver) and in that way are able to help each other even more. In addition, the trials and raindrops in our lives bring us to depend more on our Savior, and help us to long for heaven even more, for truly, this world is not our home! (we are just passing through)

 

Trying Hard: Thank you so very much for sharing your story and your wisdom. I am so sorry that DBS surgery had such complications for your husband.  I pray that I will be as kind and dedicated of a caregiver as you are, if and when the time is needed. I've got to go back to work, it's been a really busy week, or I would comment more. Gotta run! More later!

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