Hello I'm looking for some advice. My mum got diagnosed with CBD 2 years ago shes had symptoms for a while and has alien hand. Friday morning she flooded my aunties bathroom after forgetting how to turn the taps off then started panicking and became so bad she had to get taken to hospital. I find it really hard to understand how she has declined so quickly in just a few days. Her mobility on her right side has got so bad she cant walk and finds it difficult eating and drinking. I understand from what I've read that it's the natural progression but I dont know how she became so I'll so fast. Today she was hallucinating and struggled understanding and talking. I've done nothing but cry. Is it normal to decline so quick?
CBD progression: Hello I'm looking for some... - PSP Association
CBD progression
I’m really sorry that you and your mum are having such a hard time. We all seem to have our ups and downs. Others have mentioned to check for a urinary tract infection. A UTI can trigger odd behavior.
I always suggest reviewing the medications and if anything has changed. Review possible side effects from the drugs she might be on.
My husband leaves the water running all the time and I have to watch him like a hawk. Sometimes I make it a game. He’ll turn the faucet on, I turn it off, he turns it back on, etc. we both laugh about it. I don’t know why he thinks it’s funny but I’ll laugh with him because what other choice do we have?
Hopefully the doctors can figure out the decline and get her back to a new normal. Please know that you aren’t alone.
Sending hugs...
Xoxo from I SewBears
Dear Bobbiejo,
I'm so sorry about your mom. I do know from my husband's CBD and what others have posted, that the "stepdowns" can come suddenly with no apparent trigger and the loss is lasting. The time on "plateaus" can be different for each person.
I do hear members say to check that there's no UTI happening as it causes toxicity and disorientation including hallucinations.
I hope you have a good physician who's helping you and your mom.
XXX. Anne G.
Hi — I’m sorry you’re experiencing this. My mother has CBS and has shown symptoms for 14 years. Nearly every symptom she has has been sudden onset.
Bobbie Jo,
To observe any CBD related decline is too rapid. This cruel disease reduces us caregivers to tears often either from seeing our loved one decline, or when we hear your story that reminds us of how our loved one declined. From my experience, 2 years is actually a long time to have the correct diagnosis. My wife was diagnosed with CBD 9 months prior to her leaving this earth. We sought out a correct diagnosis when both her neurologist and I could tell it was not classic early onset Alzheimer’s symptoms( her original diagnosis).
Your mum’s symptoms you describe were very similar to my wife’s. I believe I thought the symptoms were progressing slowly initially because we could easily compensate, however toward the end, there was nothing she could do when she lost her voice, her ability to feed herself, and significant cognitive abilities.
My heart breaks for you. Prays of wisdom and strength(physical, emotional, and mental) as you show your love to your mum by caring for her.
Bobby