CorticoBasal Ganglionic Degeneration
(operative word - DEGENERATION)
A story told, as it happens, during the travel down the narrowing road of a debilitating disease.
Can you possibly reunite with the old you?If not, will you see how close you can get!Secretia
Hi CW! What a sad entry! :(As we all grow older, we miss the person we used to be! Our body and mind don't work the same... sometimes not even right, much less 'the same'! BUT... the good news is that our spirit should work better and better!! Our spirit should get sweeter and sweeter as we grow older... and WISER...We learn what's REALLY important in our lives!!We learn to spend time doing the things we REALLY want to do!!We learn to show the ones we REALLY love just how much we do love them!!We learn that EVERYTHING of this world is TEMPORARY!!We learn to UNDERSTAND that ONLY heaven and hell are FOREVER!!So... we must learn to focus on our Maker and look ahead to what He has for us... NOT HERE, but ETERNALLY!!! :)CW, I can tell by your entries here that you are a very WISE man! I can tell that you love your family! I can tell that "Superwoman" loves you! So, I look forward to your future entries of how you'll share your wisdom with all of us! Thank you for taking the time and making the effort! Those of us that are following your journey NEED our CW FIX!!Till the next one...
Secretia,I have mt moments were my wit comes back and laughter is easy. It's just the time between the moments seems to be lengthening.TnQRus,I was traveling happily down the path to old age when I got hit by this metaphorical truck. Except the truck won't stop running over me.
Bob, your entry brought tears so quick, i feel so many of the emotions you must feel. I miss my husband so much. We get to have our sad times, we try to hide so much of our pain from each other i know. WE are being robbed of the future and how we were suppose to spend it, sometimes i want to scream how unfair it is. I feel your pain, your sorrow..tomorrow we will look at another day and be strong again. Karla
I hear you! This is a very real experience-- to come to the place where you are saying, "I miss my life and the person I was before this disease struck!" I totally understand. I wrote an essay in my book, I WILL GO ON: Living with a Movement Disorder, in which I addressed this, entitled, "Two Dan's No Longer." When you can no longer do the things you once did and the man we were to our spouses has changed so much that it can be heartbreaking for you and her. You have my heartfelt understanding and compassion. I wish I could tell you differently, but you said it all too well. The beauty in this is that our wives do want to be with us through such a trying experience and that is a beautiful thing. We are blessed that they are in our lives, in spite of the changes that have overtaken our bodies and minds. Take care friend.
Hey CW... Maybe you need to change paths!! Try one that 'trucks' don't fit on! :)Hang in there! We're all prayin' for you!
It is your wife that I feel sorry for the most.I will gladly share with her all I have found out about CBD over the past four years. All she has to do is start with this web site:http://www.perpetualcommotion.com/a/preface.html
I don't even know what to say.. I definitely cannot say that I can relate... It's probably cliche and you must have heard it a thousand times, but try staying strong as you always do - that's the best anyone can do.
I am a wife of a 61 year old CBD patient much further along in the disease than you. He's bed fast and non verbal but knows everything that's going on around him and I'm grateful for every day we have together. After having known each other for over 50 years and being married for almost 42 I can't imagine my world without him. I'm sure your wife may miss the old you but I guarantee that she's so happy to have the one she has right now with her every day.
Thank you for allowing us to share your pain.
Dear Bob,Thank you for being so honest in your blog, this entry is much like a haiku...so few words, so deep the meaning.I am grateful for your keeping of this blog. I think this is such an opportunity for others to see and experience what CBGD from the personal experience, and I really hope that your blog will shed light for the medical community in their quest to figure out what causes CBGD and a possible cure...Take care and don't deny a thing Bob, no matter what anyone says...this is your journey, this is your truth, others try to edit it, or frame it from their perspective so that they can emotionally deal with it, but when all is said and done they are not going through it...it is not their body, their mind...feel it all Bob, and I have a feeling while the hell of it will hurt, I will hope the remaining Grace, that you find in Nature and in Love you will feel to a higher degree than you ever have. In my thoughts, in my prayers...Gretchen
Thank you. You've inspired me.corticobasilwhat.blogspot.com
Dear Bob,You have made me laugh and cry, but most of all inspired me to start my own blog (especially for us CBGD who are so young, I'm 54). Sorry for the semi plagarism my blog is corticobasilwhat.blogspot.IF YOU READ IT BE KIND i AM JUST LEARNING ALL THIS,
I read ALL comments right after they're posted. I may fail to respond, but please know your input is appreciated.