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Topic Do we offend you, embarass or anger you with our posts?THANKS to you! Go to previous topic Go to next topic Go to higher level

By dkleinert On 2009.10.20 11:47
LOHENGR1N and Bandido1: Both of you are the most giving, caring, and loving people. You listen to all of the concerns we have, hear about stages of PD you have not yet or will never experience, and still you continue to be of so much help to us. I pray that our posts do not put fear in your hearts, worry in your souls or in any way stress you. You have so much to deal with on a minute by minute basis. You have both been a HUGE blessing to me, and have given me insights that I could have not gotten from anyone else.

Once in a while, can both of you please post an update on how YOU are doing? I know many of us feel like we know you personally, and we know you are dealing each day with PD and its progressiveness every day. Please keep us posted on how YOU are feeling. coping, and what you are currently facing and if there is anything WE can do to help you.

Blessings to both of you and MANY THANKS!

By Mary On 2009.10.20 12:17
Al, as usual, thank you for your message and words of wisdom. You are a good guy and I would love to hear how you and Bob are doing from time to time and not just always helping us caregivers. Maybe we can help you sometime, maybe? My Dad does not seem as reasonable as you and Bob but it is also hard telling your Dad what to do. Telling my husband what to do comes naturally! I love you both and feel blessed to have come to meet you and others through this forum. Hugs and blessings, Mary

By LOHENGR1N On 2009.10.20 12:41
I posted this yesterday on another thread, it's what Mary is refering to;

Mary, You asked; "Al, is it difficult for you when us caregivers vent because of feelings of being overwhelmed or frustrated, etc.?" In all honesty at times Yes. However the vents, overwhelmed or frustrated feelings are necessary and need to be aired (posted). When I read about the problem, I may have My own knee jerk reaction, then I look at it and try to bring both sides together. A middle ground to make sense of what's going on. Without the vents I wouldn't be able to speak from our (patients) view of a problem or conception of a problem. I don't to claim to speak for all Parkinson's patients but I can give a general view of what's happening and might be the cause of miscommunication or misconception. I've been battling P.D. for a long time and seen many come and go. A lot of times a new poster will post and it's something that's been asked and answered many times, but that's ok because it's new to them and important they find an answer. I've been blessed with the ability to break down a lot of the medical terms and talk to layman understanding and will continue to try till this disease is able to stop Me. Thank You for asking Mary, I think that's the first time anyone's ever asked that of Me. Thanks for the concern again. No worries here, I've got broad shoulders plus as a perk of Parkinson's, they're rounded now so if things get too heavy they'll slid off! Just keep posting. Take care, best of luck and hang in there.

By LOHENGR1N On 2009.10.20 12:48
Dkleinert, thank you also for asking.

By mylove On 2009.10.22 17:54
Al, Bob, and the others that have posted from time to time:

I hope that you don't feel like you can't be here because of the 'caregiver' in the title of this board. Of all of the info out there, right now the info I'm most interested in is how YOU feel. What is it like to be inside? How do you feel it works best, from the inside out? We on the outside can't know what it feels like to be inside the disease. Your insights give me so much more knowledge on what do to and how to do it. I never want to forget that at the end of the day, we are talking about PEOPLE and not SYMPTOMS. You help me to remember that.

By mylove On 2009.10.22 18:07
And one more thing: It strikes me that calling you 'the Parkie' or 'the patient' is akin to talking about someone like furniture while you're in the room, and it feels somewhat disrespectful to me. Is there any better way to put this, without saying 'our loved one with PD' all the time, which is a mouthful, BTW! Do we call you 'OLOWPD's? (just kidding)

Seriously, though.... is there a better term?

By bandido1 On 2009.10.22 18:31
mylove: Your post reminds me of the comic line from TV??? "well you can call me Ray, or you can call me Jay, or you can call me Clay, but you dont hasta call me ********"
Now jump to my last paragraph for a wrap up comment.

To all caregivers:

This reply is in answer to two threads. First, I will answer the threadĒ do we offend you?Ē and then, a comment from me on the dementia thread.

Thanks to dkienert and Mary for the kind words in your post. Al and I appreciate your recognition of our efforts to assist caregivers in managing those patients who we are sure are much more difficult than we are. I think I speak for Al in saying we enjoy working with all the caregivers participating in this forum.

Coincidentally, I visited my primary Dr. Yesterday for a six month checkup. Summarizing his report, he told me he expects me to be visiting him for the next 3 to 5 years! Notwithstanding my total disability status, I appear to be fighting off many of the negative aspects of this dreadful disease. So, Iím back to spending the bulk of my time assisting nine collaborators in writing a book from a patientís point of view. For what itís worth, I attribute my success in dealing with parkinsonís to a mindset which refuses to give in. This includes avoiding alís warning that my speech recognition software will eventually fail to understand me. Iím using it now. It does not like most of the words I use that begin with the letter ďsĒ. So from this point forward I will begin substituting **** wherever needed. Reading my material will be similar to solving a crossword puzzle!

Turning to the dimension thread, the lead article is very informative and consistent with some exposure of my own. Prior to my parkinsonís diagnoses I was experiencing numerous short term memory problems. Suspecting early Alzheimerís, my primary Dr. started me on Namenda. It is still on my list of 13 drugs taken daily. Further, my father-in-law died of Alzheimerís two years ago.

I agree with those who recognize that this forum is for caregivers of parkinsonís patients. However, is apparent that some patients are afflicted by the Alzheimerís mutation. Caregivers should seek information on one or more specialized forums dealing with Alzheimerís. See NeuroTalk.com for a site devoted to that disease.

In the meantime, all of those considering leaving this forum should recognize what a wonderful contribution youíre making in our collective efforts to inform, educate and assist caregivers in their management of parkinsonís patients. Bob C

P.S.
Actually, patients on other forums usually use the term Parkie. in fact Mark Solomon, a comedy TV writer who wrote for Newhart, Alice, and Murder she wrote calls himself marky parkie on the patients like me forum. ParkieBob C

By mylove On 2009.10.22 20:19
Bob, we love you. You know that, right? :)

By Mary On 2009.10.23 10:19
It was nice hearing from you, Bob. I haven't seen you post in a while and was worried about you. Hugs and blessings, Mary

By annwood On 2009.10.23 12:52
Hi, Bob
We have missed you! Glad you are back with us. We do worry about you as part of our family.


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