Hi, I joined this group 20 days ago and I can relate with many of your heartfelt stories. Thank you to everyone for posting. Questions and replies have helped me to know that I’m not alone and although that’s reassuring, I do not wish this club on anyone!
Our neurologist wants to get a second opinion, scheduled 2 months out. The doctor says he’s going out on a limb with a rare and exotic disease known as CBD. It will be going on 2 years just trying to get a diagnosis. Here is a list of symptoms that I started recording just this past week because someone on this website recommended that I start journaling. After you read these symptoms I would appreciate your thoughts on where you think we are with this nightmare. I know that everyone is different but I’d still like to hear your opinions, like what to expect next:
He shuffles and drags one leg behind him. He looks at the ground when he walks and sometimes walks on his tiptoes and then speeds up to avoid falling forward. His body will occasionally jerk/spasm and he doesn’t use the right side of his body very well. (Already confirmed this is not a stroke). He has balance issues too.
Doesn’t remember our dogs names that we’ve had for 8 years.
Wants dinner for breakfast. Talked him into having breakfast. Next day, he woke before me and he enjoyed having dinner for breakfast by himself.
Eats several meals bc he has forgotten that he just ate 5 minutes prior.
Wore only boxer shorts, a shirt, accompanied with untied tennis shoes and then stumbled out into the living room in front of company.
He tries to remove pants without removing his shoes first.
Will not. Cannot. Look me in the eye nor keep eye contact. He knows what he wants to say and what he is thinking but he can only express himself by mimicking the motions as if playing charades. Words do not form or if by chance a word is spoken, the word will not make sense or is inappropriate.
He walks around in circles in the kitchen trying to figure out what appliance is needed to get ice. He can’t push the button on the outside door of the refrigerator to administer ice. Difficulty switching between ice and water and he cannot screw the lid back onto his cup. This takes place after searching the house for where he might have left his cup.
Remote controls are a major problem now. Our computer and cell phones are foreign objects. Everyday he tells me that the computer is broken.
He falls asleep during mid sentence while sitting in an upright position. He looks pale and his eyes are puffy even though he sleeps all the time. Breathing while sleeping is loud and sometimes he makes gurgling noises. He talks in his sleep.
He seems to understand what is happening while in the moment but often forgets what just took place and then wants to be reminded. No concept of time. I keep a white board updated with the day of the week and the month/date but we’re at the point where that doesn’t register with him anymore.
He doesn’t even know when I’m home or in the same room with him.
I have not noticed any issues with swallowing although he is prone to sinus infections which is treated with antibiotics.
Since I’m just now finding out about this disease I’d like to understand what else I might come to expect. Any guesses as to what phase or stage we’re in right now? This is so very frightening!
Thank you from I Sew Bears
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SewBears
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Doesn't match my experience of CBD. But as I'm not a doctor I would advise you give the doctor the information you have bravely shared with us. It surely must help with a correct diagnosis. Best wishes. Ken.
No two people experience these diseases the same way. Nor do they progress at the same rate. That said he does exhibit a very wide range of symptoms the likes of which would leave any care taker frazzled. Larry has some milder versions of many of the things you mentioned. I humor him when I am up to it. Sometimes it’s very hard to do.
I agree with the other posters here, you list a number of symptoms which I have not come across in PSP or CBD. Also though you indicate he has balance problems one would expect there to be more falls given the cognitive decline you describe.
OK - Enough of me playing doctor!
A second opinion from a neurologist able to do scans and other tests sounds a very good idea.
Have you read the PSP Association information pages about CBD? You might find them helpful.
The shuffling gait I would expect as is a Parkinson's trait, so possibly puts him in the Parkinson's plus area.
My love had a loss of mental capacity, and showed a lack of consequential thinking; if he emptied the dishwasher, he might begin to fill it with dirty dishes before he cleared the clean ones, so he stopped doing the task. When I asked why, he told me he had lost track of what he had done.
He leaned heavily to one side at one time, but seemed oblivious to that. Did not fall over when I saw the leaning stance. However, he did fall a few times in the garden and came in to be patched up. I thought he was just being clumsy at the time.
Had muscle spasms in back quite badly that were not able to be easily eased. Later on, about 2 years later he suddenly had no control of his back muscle on one side, so flopped backwards. That was when he was admitted to hospital.
Yes, we had problems with the remote too! And the computer; my love forgot how to use each of them and confused 2 different remotes for TV and DVD player. Took him a long time to learn how to do the tasks he wanted with either of them, and to execute.
Near the end, he forgot how to read but held an open book in front of him. He could not calculate, play dominoes, or read properly latterly. He found it hard to fill in forms.
So yes, similar but different! Cognitive changes, and mobility changes and muscle spasms.
Hope you get some answers! You probably have a clued up doctor who obviously understands the difference between ordinary Parkinson's and is knowledgeable on the rarer diseases! Sounds like he is worth hanging on to! Hope you get a satisfactory answer soon. It is hell fearing what you know must be so different from 'normal' illness when others who should know keep giving you an answer that doesn't fit the symptoms!
Keep pushing until it all makes sense! Stay strong!
Welcome to the site! I have to agree with the others that you have listed a very wide spectrum of symptoms. While having cared for Dad, CBD, I recognize a few but the others I do not. I have nearly 4 yrs of notes on dad so I'll skim through them and see if anything like you mention happened.
Hopefully your 2nd opinion appt is with a neurologist who specializes in rare forms of diseases or even a movement specialist neurologist .
Thank you to everyone for responding. After I posted the symptoms last night I finally slept, if only for a few hours. There are things mentioned in your replies that have happened that I didn’t admit. It’s not denial so much as it feels more like the norm. I sometimes have trouble deciphering what is normal and what is not. Yes, he has had many falls, thankfully minor. He is extremely uncoordinated. Dishwasher duties went out the window about 2 months ago. One day he could tie his shoes and the next day he couldn’t. I don’t remember how long ago it was when he could no longer hold a pen or write. Reading is difficult but I continue to encourage him to try. We cannot get through a television show without him falling asleep. Communication/conversation is practically nonexistent. I have no choice but to put on my preschool teaching years hat and treat him the same kind and patient way that I would a child. I do feel like we’re nearing the end and every minute is precious.
I feel for all of you who have lost loved ones and for those who are suffering as I attempt to put my thoughts down on this forum. Thank you for listening and responding. You’ve truly opened my eyes.
Sorry to be late to the post. I echo what others have said, and my experience with a CBD hubby closely matches HonJen's.
If I were to compare your hubby's symptoms to my hubby's timeline, I'd say yours is pretty far along in the disease. While the cognitive loss is alarming and heartbreaking, it isn't like full-on dementia, it's like being rational but losing any knowledge of how everything works! (As well as weakness and loss of coordination).
When that happens I wonder if its really memory that is being lost, or just another chunk of his"reasoning" capacity. It sounds very much like my hubby's CBD. Mine also had the loss of reading, writing, texting, speech...(in fact his first 'maybe' dx was primary progressive aphasia.)
Does he know who you are and where he is? You say he sort of understands what's happening to him? It does sound like my experience of CBD.
Give him all the hugs and love he'll accept... You may not have that long with him....
XXX
Anne G.
Hi SewBears,
The notes you've recorded on your husband are the closest I've seen to those of my mom. I often read peoples reports of thete loved ones physical symptoms, which my mom certainly has, but I wonder why no one mentions cognitive deficits. My mom has huge visual spatial issues. It's almost as if she's blind, but not. She's no longer able to read, write, watch tv or maneuver around independently. She is unable to read a clock, even with 3" numbers. She has lost all understanding of time, but is constantly asking what time something is happening and what the schedule is like for the day. Even if told repeatedly, she has no ability to retain this information and becomes upset. She is aware if these deficits and calls herself crazy, but has no idea that she's asked the same question 6x in 5 mins. I'm not sure what is worse, the physical symptoms or the cognitive ones. It depends on the day.
Sorry you're having to deal with all this no matter what type of dementia. From what I've read there is often mixed dementias. This could be the case. My husband sounds familiar to yours but not exactly, my husband is still quite mobile. We are 7 yrs in. My husband also suffers from memory loss & that was one of his first symptoms. He has also been diagnosed with CBD. When you get this far along it doesn't seem so important what it is. Take care.
Hi, my husband has CBD, and several of the symptoms you describe are what husband experiences. Although my husband isnt having any cognitive issues at this time. Have you asked his doctor about Lewy body dementia? My friend's husband had that. It sounds similar to that as well.
Aww Sewbears, I feel for you. You aren't alone its so frustrating when you haven't got a diagnoses. Keep talking about your experiences and sharing them with the group and hopefully you can find some peace in listening to others answers and experiences. Stay strong Stay positive
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