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Topic Bandido and LOHENGR!N?? Who are these guys? Go to previous topic Go to next topic Go to higher level

By bandido1 On 2009.11.05 19:38
OK! Caregivers: you have managed to divert my attention from collaborative book writing to this forum again. The onslaught of new postings brings me out of the shadows and encourages me to continue my contributions to this wonderful caregivers information site. Thanks to those who have complemented both Al and me-much appreciated!

I'm anticipating Al will speak for himself when he spots the subject matter, So this is a brief recap of the guy who calls himself Bandido. He is now 78 years young having been diagnosed almost three years ago but probably symptomatic as far back as 10 years ago -gait, balance, slight tremors, restless leg syndrome. Virtually totally disabled from untreatable back problems, I spend most of my days traveling from one room to another on my walker and in a lot of pain. I take 13 medications daily including Stalevo and RequipXL for PD. The others involve support for a heart condition, hip joint replacement, and sleep aids. On a rare instance, I will take the pain pill for temporary relief.

As Annwood frequently reminds readers, I am a tough love advocate. I'm experienced in managing people who require tough love. For over 50 years I served as a trust administrator for the wealthy and weak, intelligent and incorrigible, sick in body and sick in mind, -you get the idea! When I speak through this voice recognition software, it is with the same passion that carried me through a career.

Though I may appear to be hardnosed from time to time, I've always tried to be compassionate and that is certainly true with respect to my dealings with caregivers and their patients. However, I do firmly believe that much of the behavior patterns discussed in this forum are manageable with a little tough love. Therefore, I encourage each of you care givers, particularly those new to the forum to read threads written by Bandido and LOHENGR!N. I will, of course, continue to monitor the site and provide some targeted answers as needed.

Lastly, for those who don't know me, please learn to tolerate my somewhat distorted sense of humor. Without it I would be a total basket case. Bob C

By annwood On 2009.11.05 20:55
Thank you, Bob. You are my hero and that sense of humor often lightens my day.

By overwhelmedinFL On 2009.11.05 21:52
Thanks for the intro to those of us new around here!

I am pretty sure you are the twin of my dear friend Harry that passed in 06 from PD. Same personality, Columbia grad, retired from long career managing wealth for his clients at Dean Witter.

You brought back great memories of him tonight.


New one around here you probably want to give tough love

By dkleinert On 2009.11.05 22:16
Bob C - Thank you so much for all you wrote. I have been on this site for about 2 years, and have never known much about you except that I cherish all you write and have learned soooo much from you. You are indeed, an awesome individual. Tough love is the key - hard to do for me - but I am learning from you and others. THANK you for all you do for all of us. I am looking forward to your book. Donna in NC

By LOHENGR1N On 2009.11.06 00:57
Ok since Bob started this thread and has somehow gotten me involved again in His schemes............(sorry I was thinking about His "tough love" and pondering if He's about due a trip to the woodshed hehehe).

I'm Al, aka LOHENGR1N. I'm 57 years old, diagnosed in 1986 at age 33, a few months before turning 34. I was a welder in my pre Parkinson's life. As Bob said when thinking back some symptoms were noticeable years before. But that's the nature of the beast, pronounced and diagnostic symptoms usually show up after 60 to 80 percent of the dopamine producing cells in the brain have died, so it begins long before diagnosis. We sometimes think, "Boy if only I had the chance to do it over again!" I'll let you in on a little secret folks...NO WAY! Especially the last few months of 1985 and first few months of 1986! I ruptured a disc in my lumbar region in fall of 85, divorce came also before the end of 85, then early in 86 diagnosis of Parkinson's Disease! Wayyy back then this disease was mostly unheard of in younger people. Unfortunately, this has changed through time. Talk about life blind siding someone! Through these years I've battled hard against the progression. One of the rare pluses is along with warping our bodies Parkinson's warps our sense of humor also, else I don't know how I would cope. I wasn't much on vanity before so that serves me well as pictures of myself and mirrors don't hold much interest for it some form of denial? Hell yes! To stand and look at the mirror or pictures I see the way Parkinson's is slowly winning!

Before I digress too much here I was 1986, divorced, three young children and an incurable progressive neurological disease! What the heck was I going to do? I embarked upon educating myself upon my condition, prognosis was bleak at the time, information while scarce was out there. The one thing that I noticed was Parkinson's wasn't talked about, this lack was glaring. A huge void which helped no one. I had the privilege of going to a neurological referral center in Boston and meeting a wonderful Doctor. A friendship began, we both learned. We treaded on new ground together learning as We went. He passed a few years ago, but I carried on. Early on People used to say to me things like they were so sorry I had this disease. My answer then and now to such is don't be. If I didn't have Parkinson's Disease I would have missed meeting and getting to know them and so many other's struggling with it. With looks of disbelief they'd respond you don't mean that! I did and do, I've often been called a cynic but I believe I'm more of an optimist. I believe We each can make a difference, each can stop for a minute listen and help, even if it's just a "I know look" or pat on the hand, a bit of information gleaned somewhere that makes life just a smidgeon easier for someone else. This is why you'll find me in places like the forum it's because we're all in this together we have the opportunity to make some difference in our lives. So here I am, a bit worse for the wear (I've got some fractured vertebra from falls to prove it, wanna see my X-rays? wink, wink) slower, clumsier but still trying to help. If you read this you know a lot more now than most about me.....damn I hope I didn't blow my mystique! Take care, best of luck and hang in there!

By karolinakitty On 2009.11.06 07:44
Al and Bob ... you two are priceless ..... without the view of a patient I believe some of us would not see the whole picture..... Pd has 2 points of view and we need both sides in order to see things clearly....Tough Love ...we all need it ... Bob i wish you were the trustee of my mans family trust ...maybe we wouldn't live in a DW and his brother in a $2mil house, that just adds to his stress level ...

Tough love is good for all of us and it adds to what we as caregivers need to have.

Both of you have the greatest sense of humor ...Al ... you're alot like my man...very dry, and oh you just put it right there ....

Thank you both for contributing like you do and helping out us caregivers. While i have my philosophical man to keep me on top of things, ya'll just add to his wit and charm that keeps me going and not getting into the "woe is me" category.
There is life during PD and both parties need to see that there are those who can stay level in all of this .....

Thank You Again ....Penny

By Emma On 2009.11.07 06:33
Love both of you guys! I really appreciate the fact that you make the time and expend the effort to give us the benefit of your humor, insight and wisdom. You are a breath of fresh air. Thanks for being here for us. Hugs and blessings to you both!

By mytngenes On 2009.11.08 13:30
Bob & Al,

Being new to this forum, but not new to life with a PD'er, I want to thank you for your posts. Bob, I definitely need to be reminded of "tough love". Why is it that we can practice it with our children, but it seems so mych harder to do with our spouses?

I appreciate you both and look forward to hearing more from you!


By dkleinert On 2009.11.09 01:29
LOHENGRIN: You are a hoot! Thank you for all you wrote about yourself. Being fairly new to this site in the last year or 2, I didn't know much about you, except the great humor, candor and wisdom you impart to all of us. THANK YOU for being YOU!

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