This will be my final blog post.
I've spent the last few years trying to tie up loose ends and for the most part have been successful. I had envisioned ending this blog on a grander note but like many things in my life it just didn't work out.
This blog has given me the opportunity to voice things I could not speak. Through it I have met people who have shared my illness, understood the pain, and encouraged me. For that I am thankful.
My illness has worn me down physically. I, naively, thought I could mentally "tough it out" but I underestimated the toll that incessant pain can take on the mind.
So, I must end this blog with a whimper. The good news is another loose end is forever bound.
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Goodbye friend. Your presence will be missed. Godspeed on your journey. May you find rest?
ReplyDeleteThanks buddy! Go Cards!
DeleteI am really saddened that you feel this way. What does this mean for you?
ReplyDeleteBill,
DeleteIt's really just a matter of letting go of obligations. The impact this illness has on my loved ones drives me to make difficult decisions. It is my hope, indeed my prayer, that my final actions are timely. Some days I believe I've waited too long and other days the sunshine seems to bring hope. At this point, I'm no longer hoping for years or even months. Every additional day has its blessings.
I'm sorry to abandon you like this, but this is the path I have chosen. I have found peace with my decision to move on. I sincerely hope you find peace along your path.
Bob,
DeleteYou are, by no means, abandoning me or anyone else here. Even if you are no longer able to blog, your words and your example endure. For so many who are searching for answers and, barring that, for insight and empathy, your journey speaks volumes. Thank you for sharing yourself with us.
God Bless you - You've been brave and shown your followers determination, strength and also acceptance. None of us know what lies ahead for any of us. My mother had the same condition for about 10 years.
ReplyDeleteThank you for your kind words.
DeleteThank you for sharing this part of your life's journey with us. Love to you and your special carer.
ReplyDeleteThank you for sharing with us what you've been going through. It has helped me understand a little more of what my father has gone through and is still. We're ever appreciative of getting the chance to meet you at Kel on Wheels and for all the insight you've shared with my mother. Take care and godspeed.
ReplyDeleteBest to you and superwoman!
K2
Kel,
DeleteMy trip to Iowa and the subsequent communications with your mother have been invaluable to me. Try to continue to be strong for "this too shall pass." Please give your mother a hug and tell her it's from me.
Bob
Dearest Bob,, i will call you soon,, but need to respond here on your blog that you created and loved, and how you and i connected through your wonderful verbage. The insight you have given me has helped me be a better caregiver to Kel. I will always treasure the BOOK you gave us and that we continue to look through,, just last monday our friend BIll Collins was here to visit Kel and he saw it in the living room and thumbed through it showing KEl the pictures. Kel has stopped walking, is on a foley catheter, and we now use a Hoyer lift to move him from bed to recliner. The live in caretaker is working out so far well, and she takes good care of him while i am at work. Kel would dearly love for this to be over, in moments where he can have clarity and able to speak he tells me that. I know now i shall be able to honor his wishes that he declared long ago. Hospice is here every 10 days about, his vitals are good, so he could be this way for a long time yet. Are you finding joy at all in the day to day?? My heart aches for you, as it does for Kel, some days are tough,, last night at church, i prayed for God to intervene, this is not right to live like this when the kingdom of Heaven is there, and now that my mom and Kel's mom are there waiting I want Kel to have no fear when that day comes.
ReplyDeleteI am a better person for having known you, many thanks for your wonderful blog,, i reread them too you know.....karla
Dear Karla,
DeleteYou have meant more to me than you'll ever know. Between our direct communications and your posts on the Yahoo support group, you opened a window that allowed me to see my future. I will be forever grateful. You WILL find peace. I have!
Yes, I still find joy. I pray you can too.
Bob
Thank you for sharing the perspectives gained from your journey. I hope you can get some relief from your pain - persistent pain eats at the soul like nothing else. Best on the next part of your journey.
ReplyDeleteThank you for your input and comments along the way. They've given me strength.
DeleteDear Bob,I have appreciated you as my fellow blogger and have gained insight from your writing. I am disappointed I won't have your words to lean on and yet very grateful for the time we could follow your thoughtful expressions. I so wish you didn't have to suffer from CBD. As a fellow patient with an Atypical Parkinsonian Disorder, in my case, MSA, I truly understand why it is time for you to direct your attention elsewhere. You will be missed greatly. Do take care, Dan Brooks
ReplyDeleteDear Dan,
DeleteI've admired your strength while following your posts on your blog. I hope you too can find peace.
Bob
I'm so sorry to see this is your "FINAL POST." I just recently found your site, and I've read it from the beginning of your diagnosis of CBGD. My Mom was diagnosed with the same thing. My Dad has tried caring for her by himself for the last year and a half. She really didn't get too bad until about 5-6 months ago, when she began falling daily. She fell on Jan. 22, 2013, face first on to a tile floor, and was admitted to the hospital for observation. After 8 days of unresponsiveness they inserted a feeding tube, and she is now much more responsive....although not accepting of her disease at all. She is totally frustrated that she can't get up and do the things she has always done. She is now in a nursing home (supposedly only temporarily for rehab). My Dad wants her home and she wants to be home. However, that would require 24/7 nursing care, and I'm not sure either of them quite understand it. My Mom just turned 78 on Feb. 1 and my Dad will be 78 in May.
ReplyDeleteI just want to thank you for writing this blog, because it has helped me to better understand the disease and what may be the future for my Mom.
What really saddens me about your blog is that you are just a couple of years older than I am!!! I wish I could have met you, and I so hope you don't suffer too much more! I hope Superwoman keeps her head up and carries on. She definitely has a special man in you.
All my best!
*Karla*
Thank you for your kind words. When I started my blog I had hoped to help others by giving them insight into the path of the illness. I can say now with certainty, I gained more than I gave. I hope your mom and dad find peace and you in turn. Again, thank you!
DeleteYou have my admiration and appreciation.
ReplyDeleteLove and Light on your journey.
Bob my friend...you have been a never ending source of drive,inspiration and insight that I will treasure forever and use as a source of strength through my own challenging times...Thank you for writing this blog, sharing your trials, and being so honest with us..I will visit here often and reflect as I have already done many times...I wish I could have met you and shaken your hand, and give you a hug...or a ride around town in my taxi...you have lived as I strive to be...rarely am I buckled through blogging, but you sir I hold in the highest regard, and as I type this with watery eyes I already miss you and wish there was something i could do...however, know that your wise words and spirit are embedded in my mind and heart, and travel the New York City streets along with me and will continue to be a part of who I am...forever...your journey has affected mine, and I'm grateful to you for it...Thank you for that, and God Bless you brother...I have many friends and loved ones you will meet on the other side,and they are the best of people just like you...My thoughts are with you my friend, I am a better person from reading your thoughts here and your comments on my own blog...and am forever grateful to you being someone I admire so much that I just want to keep writing to tell you, or convince you to stay...my selfish delusion, I know..I find it hard to let go, always have...til we meet again...Peace my brother, see you on the other side, count on it. ~ Edward #KONYH
ReplyDeleteit was great getting to read ur posts.mysister to has deteriorated badly.i wish i knew exactly what your physical abilities were before you wrote the last post.can superwoman let us know how and where you are.we all would appreciate that.there are no tears in heaven.x
ReplyDeletei hope you will read this bob....please ask superwoman to put this blog into a book,with all the pictures .leave nothing untold.It would be a fabulous memory of you to carers and sufferers alike,thank you
ReplyDeleteDear Boss- I just wanted to let all your followers that may not know that you passed peacefully a few months ago.I sure miss you every day and was honored to be able to carry you to your final place of rest.I am not to manly to tell you I loved you and I will see you in heaven.thank you for the honor I had of being your friend.Scott Haynes
ReplyDeleteBob, Are you still checking in for messages from time to time? I am your old fellow blogger friend, PD Plus Me (We Will Go On). I would like to talk with you about CBGD. Thanks, Dan
ReplyDelete