Helping Those Who Care for Parkinson's Patients
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You said in one of your posts that you are at stage 5. You also keep talking about seeing everyone on the other side. I don't like thinking about any of this but this morning when I was driving in to work, I started worrying about you. I know there isn't much good with worrying, but I as I grow older, I find myself worrying a lot more about life stuff and things I can't do anything about! I just want to take the opportunity to let you know again, how much I appreciate your input on this board. Your thoughts and reflections have certainly helped me try to understand this disease not only from the caretakers viewpoint, but from the patient's eyes. Blessings and peace to you and know that when it is your time to go, you will be missed! Until then, I am looking forward to reading many more valuable postings from you. Thanks, -Jenny |
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| Ditto. And I'm no doctor, but your posts certainly don't read as if they are from someone at that stage. I hope to read many more posts from you, love your wit and sense of humour, you're a treat! |
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| Yes I caught that too Bob! Not that long ago you were a stage 3, I chalked it up to a mis-tap (equivalent to a mis-step) on the keyboard, you know a typo. If it wasn't spill you guts buddy come on fess up! You can't skip over stages....it's not allowed! Don't make me send you back to the start for cheating. But in all seriousness Bob, let Us know what's up, You've got your own thread on here now...caring minds want to know! Take care, best of luck and hang in there. Sincerely Al. |
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Rajen,lurking & my buddy Al: First, thanks for the nice words and thoughts. I "graduated" from stage 3 to 5 after updating my profile in the PLM ( PatientsLikeMe ) forum for over 3000 Parkinson's patients. It is computer generated and based on a plethora of data that patients must update monthly. Since I am a 2 finger keyboard jockey that is not a simple task for me. The good news is that whle my muscular structure seems to be catching up to my 90 yr old back, my brain is still fuctioning at about an 85% level. So, at least once a day,when I am "on".I try to sign on here and help out wherever I can. That is one reason why I think our creator has me hanging in. Bob C |
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I think that you are right, Bob. The Creator needs you to help all of us. If you are at 85% mentally you must have been terribly bright and funny at 100%. I really enjoy your posts. Your comments demonstrate a tremendous amount of insight and are much needed by we caretakers who are generally operating in the dark. (You too, Al) Let us know if we can do anything for you. |
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| Ok Bob, Just because that site says stage 5 doesn't mean it's stage 5! It's only a web site, data fed in, data spit out. Sure it is built to consider more aspects then the Hoehn Yahr scale but........it's still a computer web site. I'd defer to a movement disorder specialist, or Your Neurologist before resigning yourself to being a stage 5. This from Me. Bob, though I may be younger, I've been in the trenches battling it out a lot longer than most 24 going soon into my 25th year of living with Parkinson's. Keep swinging, never concede, if you must give ground do it kicking and screaming (not real screaming, or too much screaming...might lead to committal)! Denial has it's place, just keep it to manageable size! Depression can get You down, keep it at bay, if help is needed, hell what's a couple more pills? I mean We get to take so many now, the only up side of the pills is more water to drink, less chance for dehydration. Look for and find a silver lining, even a brief shimmer of one in things. Remember, a new medicine brought "onboard" in many instances can bring improvement for a time. You're not that long into the medicine's there are many that Your Neurologist can try. This is why I personally don't care for the "stages" they aren't set in stone! Ok enough of My big mouth for now Bob, You take care, best of luck and hang in there and here. sincerely Al. |
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hi everyone, its nice to hear from Bob.C. hope his doing well his a wonderful man. |
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You (and Al...and some others) are such an inspiration to me, Mr. "Bob Bandido", and I wonder if you have any idea how much your insights have helped me and my dad. I feel so privileged to have met you even if it is only through this goofy internets. I'm sure my dad would express his gratitude if he could. Wow 90 I had no idea. Please know that you and your family remain in my thoughts and prayers. |
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| Thanks to all for the kind words. Every other month I will be contributing to the commnet tab with a patient's perspective about matters appearing on this board. As many of you know I also spend a lot of my time as a Parkinson's patient advocate working with the Obama-Biden Transition team. Currently we have a report with Tom Daschle, Secretary Designate, Dept. of Health and Human Services, dealing with National Healthcare Reform. While the suggested reform deals with the development of a national database of healthcare information the "trickle down" feature involves the use of patient and caregiver input to enhance information sources now available to researchers, scientists, medical professsionals, caretakers and patients. As you might expect my goal is to assist those working to find cures for Cancer, ALS, AIDS, MS, Parkinson's, etc etc. I intend to "hang in there" until the final stage ends my role. Bob C |
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Bob, You are an inspiration to all of us!! The Almighty does have work for you to do. When my husband died I spoke at his memorial about the fact that he continued to teach us even after he was diagnosed. In addition to being a physician he was director of the medical student clerkship for 38 yrs. Teaching was his passion. I think as he continued to work for 15 yrs after being diagnosed with PD his example taught the students something they will never find in books. Perhaps that is what people with PD do ... they teach us all so much about ourselves. I too am working as a PD advocate and have done some caregiving films that will be out soon. Let me know if I can help in your effort. You are dealing with some pretty big names there! |
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| Bob, I wish I could give you a hug. I just think you are terrific. Your honesty and humor are very helpful to me as a caregiver for my Dad. Many, many thanks - love you, Mary [P.S. does your wife have input on our forum?] |
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| Mary: Thanks for the kind words. No, Jeanne is a cancer survivor and spends the time she is not caregiving me with charities related to the search for that cure. She does ,however, look over my shoulder from time to time just to make sure the side effects of my meds do not trigger any compulsve behavior that might lead me toward jailtime, a lawsuit or the need for her to charge me with bigamy. LOL Bob C |
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Bob, You're a peach. She's a lucky gal (twice!) |