 |
 |
thanks so much for your commentary NK - a "heart to heart" is great if you can talk. I can only do 2 and 3 word answers. Here is what I wrote to Kathy, my CG "I think we need to try communication by my using the computer as it is becoming more and more difficult for me to speak. I may get so I can't speak at all. Every time I try to speak I feel like I am strangling. It is impossible to modulate the tone of my voice. People with Parkinson's are told to "speak louder" and doing so does not help as it gives you the impression that I am angry. I know that this really bothers you and I wish you wouldn't take it so personally. More than that I wish I could get my life back but I will only get worse. I don't know how I can make it easier for you. Yes, I wish we could talk things over. I'm willing to listen." I'm thinking my difficulty is something like Tourette's Syndrome in that unwanted sounds come out. Imagine how you might sound trying to talk while being strangled. Angela, I am not suggesting Margery goes through the same thing I do, everybody is so different. Also, I have a good friend who really tries to understand but persists in questioning me. It is impossible for me to know what other Parkies experience or what I will experience as the disease advances. NK, I know Kathy has an unsatisfactory home situation, living with her daughter and her family's unscheduled life and it is why I have agreed to her coming whenever she can, twice a week and I store her stuff as she has been put in a smaller space. Oh, she is also hard of hearing. Moneesha, you certainly understand where I have gone wrong. It should be a professional relationship from the beginning. Too bad I have to learn "on the job" (but who knew she'd throw out Mom's ashes), but I should have known from teaching that the rules need to be clear from the start. I gave her a list of chores and left her alone. Your observations should be heeded if someone is about to get in-home help. My Mom once had a CG who rearranged ALL her drawers and cabinets, but the upside was she was a neatnik and kept things super clean. Linda, yesterday I emailed "Alternate Homecare" in my area so I could start looking into getting a replacement. You're right, I'm not shy about my opinions, but it is not so much about what I say as how I say it. And I have scared off some crank telephone callers. Thanks so much, everyone. Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn