My name is Sandi and I live in Indiana with my beloved husband, Bruce. About four years ago we started to notice he had a slight balance issue. The doctors recommended balance training and for awhile it seemed to help. Then one day it seemed as though he had fallen off a cliff as he declined so quickly. A stroke was suspected but no damage was found. Over the next 18 months we visited one specialist after another but no one seemed to be able to determine the causes of his issues. By then, we were noticing “foot drop” and speech issues were developing. Finally a neurologist tested him and within an hour had given us the dreadful diagnosis: Corticobasal Degeneration. At first, I had no clue what that even meant and had never heard of it. As I began to read, I was overcome with sorrow, not just for me, but for what he was about to endure. I wish I could have a day without tears but so far, none have come. In the past year, he has gone from walking unassisted with a walker to wheelchair bound, There is nothing he can do for himself except eat. Choking has now become more frequent and the other day I noticed a memory issue that was quite alarming. I now have some help in the morning and at night to assist with bed. He was an avid reader but now seems to have to work at it and the enjoyment is gone. We do play checkers which he seems to enjoy even though I am merciless and do not let him win :-). I feel so overwhelmed but at the same time, even though this is so difficult, I can’t imagine my life without him. I am so blessed that he has a wonderful attitude and we still share laughter when reminiscing about days gone by. Things could be worse as he has no pain to speak of and still loves to see the grandchildren.
May God be with you all who are dealing with such an insidious disease. May he give you strength, wisdom and patience as you care for your loved one.
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Indiana-Girl
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The old bag has been going for twelve years and have found that if ignore a lot of what the experts say and carry on as normal as you can, the joy and laughter is still there. You just adjust to any changes and go over everything together.
Hi Indiana-Girl, and welcome to this site!My hubby too suffered from CBD and it was difficult to find a 'sensible' diagnosis for what was happening to him until close to the end.
My thoughts are with you both! Stay as positive as you can and try to anticipate each change in circumstances as it happens, so that you can keep on top of management.
Fight however tired you are!
Try and keep a sense of humor- you will find that can make every situation easier to handle.
You are lucky that your husband has a good attitude and you can help him cope with the changes.
Mine seemed to refuse to accept or discuss them.
See if you can get a physiotherapist to help him exercise and move his limbs. This will help to maintain strength in the short term and keep them mobilep. Hubby used a trapeze hoist to sit up in bed until he lost strength in his arms.
You will find a great deal of help and support here for both of you! We understand what you are both experiencing!
Funny, is always good Jen. When you can't win, you can at least grin🙂Indiana-girl will be in good hands here with your support and experience from others in the group to draw from.
Reading your post, Bruce’s story, your sadness and worries, brings me very close to tears...
My own experience is so similar to the one Bruce has gone through. Same progress, similar events, same struggles.
I too have had conflicting diagnoses and the closest to a certainty I have come is what a specialist described as CBD like, in that spectrum and a similar syndrome.
For my wife, the uncertainty continues. She is caring for me, but fortunately I can still manage to a point independently.
We approach each day as one at the time.
For now, I can still move but can feel it’s increasingly a huge struggle. Actually any mobility is a challenge. But I try to keep going.
As an avid reader myself, and as a writer, I gradually moved to audiobooks. And when I can I write. Some poetry and some essays. Cognitive abilities are affected too, as is my memory.
Yet (and that’s why I decided to reply to your post) I keep positive, stay with finding joy in smaller things and events. I meditate and practice mindfulness. This also helps (some) with pain, mainly due to rigidity and spasms.
It’s a far greater challenge for my wife. Like you she often feels helpless. Often she observes without comments but I can tell she sees that slow deterioration.
Reading your story here, noting a very similar timeline (illness related), I feel connected.
Happy to message anytime should you wish to ... meanwhile sending you and Bruce strength and kindness.
As Cuttercat said, the journey never really ends. Humor and smiles help. This group, that no one wants to be a part of, is a lifeline. This is where I came for information, support, and comfort. I kept my focus short term. If I looked too far down the path, I was overwhelmed, and I missed the joy in the moment. Take care of yourself, too. You are his lifeline. Sending love, Baytalon.
Welcome to the site no one wants to join - but a place where you will find support, guidance and friendship. If you have challenges ask away. I found there was always someone who had experienced something similar and could give suggestions.
It is a tough journey but we found moments of happiness and of pleasure building new memories. Sometimes I couldn’t see a solution but there was always someone who had a suggestion.
There is some ‘boring’ practical stuff to do - putting affairs in order but then seize every moment you can. We played backgammon shared the newspaper with me reading aloud, did the crossword etc
My final suggestion is to ensure you look after yourself and get as much support as you can to help you care for Bruce. Speech and language therapists can help with swallowing and advise on thickened fluids etc and dieticians make helpful suggestions which will make meal times less stressful
Good morning, Tippyleaf!Thank you for your insight. We go to see his neurologist in two weeks and I will be asking about the thickeners. I will also ask for recommendations for a stand assist machine to help me more safely get him up when we are alone.
On a happy note, for the first time in 18 months, I was able to have lunch with friends. It was exhilarating!
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wrong diagnosis????
Corticobasil Degeneration Advice Needed?
A week of WILD DREAMS!
A real shitty day, literally.
