Hello
I’m the main carer for my husband who was diagnosed with Corticobasal degeneration a year ago. His condition has deteriorated rapidly, with disability and incontinence, but the biggest problem is that he is now unable to speak so it is incredibly frustrating. He is also giving way to outbursts of anger and aggression.
I wonder who else is experiencing similar problems?
Hi Angel5805!
I'm sorry PSP/CBD/ etc. has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family I am sending you through the private mail of this chat, our experiences on PSP with the hope that it can be useful to you.
Hug and luck.
Luis
Dear LuisThank you for your comments.
I am trying to process a lot of information and at the same time adapting to the changing and erratic behaviour.
Best wishes
Elena
Hi there . My husband's neurologist won't be more specific than frontotemporal dementia but when Alan was in hospital in March the geriatrician suggested PSP/CBD/MSA. Alan could stil walk and climb stairs before 3 weeks in hospital with a UTI. He came out doubly incontinent, unable to stand so bed bound, very little speech, one hand and arm contracted, the other wandering, nowcontracted too. From my reading I think probably CBD - he doesnt have the PSP restricted eye movements - though he does have sticky watery eyes and hates bright lights. Mood wise he is mostly very stoical with occasional desperate frustration when I cant understand what he is trying to say. He understands a lot- enjoys complicated dramas on TV. Do keep in touch Angel. Very best wishes Sheila
Dear Sheila Thank you for your reply.
I’m really sorry that your your husband deteriorated after his hospital stay. Unfortunately it is not uncommon.
There seems to be a bit of overlap with these conditions and our specialists are sometimes making educated guesses, but it isn’t their fault.
Best wishes
Elena
Hello there, and I am so sorry that you are on this journey. We dealt with a lot of anger and also violence with my husband. The doctor used Zyprexa and antidepressants and that seemed to keep it at bay.
Dear ‘Ginger’The most frustrating thing is being unable to communicate. This I feel is largely the cause of my husband’s aggression.
Initially I refused strong medication for him but now I am happy to try this because his behaviour is very erratic.
I understand completely. How I wished for jeff to understand and communicate with me. He would often just parrot back to me what I said when he could speak. Then when he couldn't talk anymore, it was so heartbreaking. Keeping everyone safe and comfortable is the goal. I can only imagine the frustration of not being able to think or communicate the way you used to. And to maybe even be aware of that. I hope you both get some comfort from the meds.
I was diagnosed with corticobasal degeneration about two years ago. Just recently, I have had trouble speaking. I have some (very expensive) anti-psychotic drugs that I take as needed. I was getting very agitated. The pills make you essentially comatose. You wouldn't want him to take them every day, but if he is getting aggressive, you might ask the Dr. to prescribe something like that, on an as needed basis.
HelloI’m really sorry to hear about your diagnosis.
In my husband’s case, his neurologist said that no medication would help his condition but this is a little understood illness and I have (reluctantly) asked him to prescribe a sedative type medication to control his loud outbursts. He cannot speak but can shout.
I will see if these pills are effective.
Hi,I am also the primary caregiver for my husband who was diagnosed with PSP in Jan 2021. Unexplained falls started in 2018. Now uses a walker and needs assistance with showering and dressing. He has had irritability and anger issues since 2015. Dr has him on 100 mgs Sertraline (generic Zoloft) and it works wonders for the anger. Turned my grizzly bear into a teddy bear. I've read this drug has helped a lot of others with the anger and agression too, which is what made me ask our Dr if we could try it.
Hope this helps!
Hi, My husband age 57 was showing symptoms nearly 2 years ago but was only diagnosed 6 months ago, he has gone from running 5k every day a year ago to now not even being able to stand let alone walk. He went into a home 2 weeks ago. He says the odd word but mainly whispers now so really hard to understand, he still tells me he loves me though. He has had outbursts and sworn at me and even tried to hurt me, that is not him at all it is just the disease that has taken my amazing adorable husband, I feel broken and lost and I feel for you.
Dear Hastings I’m really sorry to read your
story, especially as you had such a loving relationship.
Your husband is young still and so it’s really tragic.
I wish you all the best.
Elena
hiya new to site
I’m new here
New to this horrible disease 
Hello, I’m new
New to the site.
