Living with CBGD

I been fighting this condition since being diagnosed in 2013. I tried Naturopathy did not work but loss lots of weight. I take levodopa 3 125 tabs 3 times a day. 10 mg Aricept per day. I just had Botox injections in my legs in October 2014 and will have more in January 2015 including my left shoulder, arm and hand. We spent a pile of money this year buying a conversion van, scooter, wheel chair, lift chair, wheel chair ramp and a stair lift. I also have trouble swallowing and have acquired a irritating cough. I live in Ontario Canada with my wife. I no longer work as I have be put off on LTD. The only good I can see of any of this is I see lots of my grandchildren and that keeps me happy.

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  • I am unsure what the "CBGD" refers to (Nerve degeneration?)......or how specifically this is related to Parkinson's Disease?

  • I Googled it. I think it means Cortical Basal Ganglionic Degeneration.

    I think that the result would be very similar to PD. Horrible.

  • You are totally correct, and the life span is a lot shorter.

  • The wonderful thing about our children and grandchildren and great grandchildren is they remind us we haven't always been ill. We are so lucky to have them.

  • I would not even trade them, even it would save my life.

  • Oh dear! I am so sorry for your pain! This site has brought me joy and fellowship.

    Keep on keeping on. What a horrible struggle.

    Jill

    CR

  • It is horrible and thank you for encouragement but life is what you make it and the cards you get dealt are the cards you get dealt. After all the time I have spent in a rehab hospital in Toronto there are many people who have life a lot worst than me.

  • Have you tried nutritional therapy? Read the Wahls Protocol, by Dr. Terry Wahls, who cured her own neurodegenerative MS with a change in diet. She is Assistant Chief of Staff at Iowa City VA Health Care and clinical professor of medicine at the University of Iowa where she teaches internal medicine residents, so this isn't fake science.

  • Enjoy your family. How lovely to have them,

    Jill

  • Thank you Jill. I have my 2 year old grandson on my wheel chair with me and he thought it was really neat until I would not let him steer it. Lol

  • this could mean the world to have grampa enjoy them so much. it sounds like your ready for anything else that might come -up , and that you know what a blessing it is to have your grand children near you.

    hang in there , one day at a time.

  • Thank you, I agree one day at a time just enjoy what I can.

  • There is always a silver lining

  • I agree and I agree to make the best of life.

  • Cortical-basal ganglionic degeneration (CBGD) is a Parkinsonian decease. You very much belong here. I hope you will post often and that you find strength here. The key word in you post title is LIVING. I am also in Ontario Canada, with a foot of snow that just might be here now to stay until April. My Grandaughters 5 and 7 are a barrel of fun. But it is nice sometimes in the quiet when they go home too. They and their parents are in Florida for two weeks vacation. My wife and I are resting.

  • Thank you for the nice comments. My family and I will be heading to Florida at the end of April there will be 15 of us. I call it the last family vacation because everyone is going on my nickel. Wife and I will drive down and take some time to our self and the family will all fly. we have not done this since 2006 and there was only 10 of then. so there has been a mini baby boom in the family since then. I am in the Niagara Region. What part of Ontario are you from?

  • Did that with a big cottage in Muskoka 3 years ago. 10 of us stayed at cottage; wife, daughter , son, granddaughter ,brother etc. and each one invited a couple friends for a day or dinner resulting in many, many people. Like you , my nickel. Best vacation ever. I hope yours is as much fun also, If grand-kids are there, It should be. Why would you go south when you are in balmy Niagara? I am in the central Ontario snow belt. Do you remember the Cartoon strip by Al Capp , Lil Abner and Lower Slobovia where there was just snow with people's heads sticking out? That is where I live, cold, but happy.

  • I do remember it> Why go south? I just want to see my grandchildren at Disney that's all. We love our country and have been almost everywhere. we have spent so much time up at lake clear outside of Evansville when my children were young.

  • Only thing I want to add to this is that a hidden gift of these illnesses is discovering how many people love you. It also gives your family a chance and time to slow down and appreciate each other,

    Jill

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