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Topic Should I have made an excuse? I didn't... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.11.30 18:50
Well, my youngest daughter, Amy (Nigel's Mom), Nigel, and my SIL Eric spent Wednesday evening, Thanksgiving, and until nine last night here at the house. They spent a good part of the day working on the Christmas lights on the outside of the house. Nigel has been sleeping in our room in his youth bed because Amy and Eric went to late night sales all night. Nigel tosses most of the night, so we had limited sleep ourselves...which brings me to this question...

We were all relaxing in the family room, when Eric said to Nigel, time to put on your pajamas. Then he said, to no one in particular..should we go home and let Grandma and Grandpa get some quality sleep tonight? Carl said, "I think it would be wise for Nigel to sleep with his Mom and Dad tonight." Amy and Eric got up, went upstairs and got ready to a go home! Which they did! After about five minutes of them headed upstairs, Carl looked at me and said, "WHERE did they go?" I said, "They are going home! Your abruptness and tone of voice made it clear. That was what I thought you meant, too...GO home." He looked shocked and realizing that he had finally spoken to someone else as he does to me..Quite simply, he doesn't realize how cold and sharp his words often are.." He went up and told them he was sorry and didn't mean it how it sounded, he meant stay and have Nigel in their suite (we have a second master)...But, although they handled it well and came back around 11 this morning, I cannot help but wonder if I should have stepped in...or was I being selfish in wanting others to realize for themselves that I don't make up his mood swings and his lack of empathy, so VERY unlike him? What would you do? I did not talk about it after they left nor since...I let the three of them alone this afternoon..

By LOHENGR1N On 2013.11.30 19:03
Jane, this is an example of how this disease confuses us all. Because of the effects of P.D. on our voice and vocal cords, mouths and lips (facial muscles) the masking not only effects our emotion expression but also how our voice comes out sometimes monotone other times the infliction in tone is misfiring and lands on the wrong words. No we are not like we once were so it is unfair to us to interpret how we now speak compared to pre-disease inflection. Should you have stepped in no but after you might try explaining your fathers voice and tones are effected by his disease so we have to try to ignore how we used to judge him and now go by a different set of rules. The old is gone, now everyone has to learn the new or else harbor ill will because of a failure to adapt as misunderstandings continue to pile up

By jcoff012 On 2013.12.01 14:08
As always, Al, thank you. While we manage the disease well, there are, for us, times like a few days ago, that are new family experiences. I guess it is selfish to want others in the family to share the bad with the good. To me, it helps me to not have to constantly explain his moods, etc., when experiencing times such as we did firsthand do far more good...

Our oldest daughter still cannot bring herself to face PD, so she prefers to tell others that I am "exaggerating" PD...'after all, MJFox looks great and he's had it a long time'..Makes me feel very sad for her loss of time with her Dad, but I am tired of trying...like hitting a wall each time I try. So very sad for both of them.

Again, than you for responding...your wise thoughts always help more than you know.

By LOHENGR1N On 2013.12.01 17:05
Jane you just brought up something I was trying to get at. Because of this disease, because of the effect on our faces and voice many, many people read a mood into what is really an innocent exchange. People are used to reading facial expressions and vocal tone to indicate a mood. Parkinson's Disease robs us of that part of the communication process. ...think about I love you honey with a smile from ear to ear crinkles at the corner of the adoring eyes gazing at you, the stressing of love you honey....now think about I love you honey....no broad smile, no wrinkles in the corner of the eyes which stare at you (see they aren't gazing they are now staring) no stressing just a flat monotone voice. It makes a big difference because in the second example one would think no you don't or apathy at the very least. Without those visual and vocal cues to reassure or lead us to the meaning we are lost and wondering sometime (many times) putting a mood or meaning where it wasn't. It's not just a hushed whispery voice or mumbling that Parkinson's Disease does to us that robs us of the ability to communicate.

By ResistanceFutil On 2013.12.01 17:20
To add to what Lohengrin has put so well, I wonder about our so-called mirror nuerons and the effect the masking and lack of emotion has had. My husband was only formally diagnosed this month but the symptoms have been building for years. The last two years have been especially difficult because it didn't seem like anything I said or did "registered" with my husband. We saw one neuropsychologist six months ago and I remeber telling him, I just wish there was some diagnosis or malady that would explain this. Maybe then I could feel some compassion rather than just frustration and anger.

I don't really think there is a way to portray to others how easily someone with PD can be misinterpreted. I'm glad it worked out for your family who was visiting.

By olpilot On 2013.12.03 02:48
It's hard to have everyone think you're mad when you're not, or think because of the expression on your face you don't care or are not paying attention. Just as every thing that goes on with this disease, I'm sure we all respond differently, but frequently what comes out of the mouth is not what the brain intended. I can't find word's I need, my train of thought derails at the station, how.do we explain this to others when we don't know ourselves what is going on? If you're just looking through the window, do you really know what's going on behind the door.?

I have tried to explain, even written letters of apology to my In-laws, for things that they perceived as slights, but were in fact out of my control. It takes so much energy to go from day to day, trying to control every nuances of expression is beyond me. At some point people outside of this little group need to try to understand we are not in control of much of our bodies and mind. If we can't control our bladders, our intestines, our movement, sometimes what we try to express may not come out quite right. Not excuses, just the way it is.

By makrivah On 2013.12.03 13:34
Oil pilot: your message came at just the right time. I had to put down our 17 year old bichon yesterday afternoon...that's a whole other aspect of daily grief watching your best friend fade and die... But I Digress. My PWP loves her too, I know he does, but no change of facial expression or other normal reactions just added to my struggle of letting her go. I am grieving and need his compassion, something he seems not to be able to give anymore. It's not his fault, I KNOW that. Thank you for your post. IT helped me a lot.

By ysracer On 2013.12.03 19:30
My wife, PWP, will say something to me that seems cruel or mean. Then later she is sorry and tells me she hears herself say these things and at the time is wondering why she is saying them. It's like she looses control of her filters.
Just another of the many things she is loosing daily. I feel so bad for her, and she will often say "What do I have to live for?" and "I don't want to go on this way" It's so hard, but I can see what she means. I often think what would I do if I could no longer do the thins that make me happy.


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