My mom was diagnosed with CBD in Dec 2019, but had been trying to figure out what she had for years before she got a diagnosis from a movement specialist in Atlanta. She went to the Mayo Clinic in Oct 2020 & basically went to just be told that CBD was absolutely what she has. Initially, I didn't research the disease (in 2019) until she came to me and asked me to be her POA & Health Care Directive holder. At that point I knew something was wrong & flooded my search engines with Corticobasal Degeneration questions.
This place is the only place I've found responsive people, so I'm hoping that once I explain what's been going on, that maybe I can get some feedback...
March 2020 - She was walking ok, a little wobbly
August 2020 - Terrible car accident that gave her a brain injury... the brain was bleeding, but stopped and after the accident, she lost a lot of her left leg. I'm convinced that if the accident had not occurred, she wouldn't have lost that leg that fast.
Oct 2020 - Mayo Clinic confirms her diagnosis & she moves in with me
This is when I started to notice more since she was living with me. In October she was having a little trouble remembering words while she was talking, but now (3 months later) I notice it's happening more. It's nothing huge, but I just know it's happening more often.
Her walk has gotten worse, she was shuffling without a cane in October, but after a couple falls (luckily nothing horrible) I got her a cane and make her use it so she doesn't fall. Her body overall is becoming more tense. I know her right side is still doing ok, but that's just from me watching her. She slurs her words every so often as well, we are trying to get her PT and OT scheduled this week as she's been out of town for about a month with her boyfriend, but she wanted to come back because she said if she didn't start PT back up, she feared she wouldn't be able to move.
Yesterday is why I'm writing though. We went to see her internist about incontinence (which has worsened since Oct as well). She drank water knowing she would have to give a sample, but when the time came to go to the bathroom, she stood up and said it was too late, the urine was flowing, but then she was mortified because she realized it was more than urine. She also had diarrhea & it had come out as easily/quickly as the urine. She was wearing Depends, but I had to help her to the bathroom, undress her & it was a disaster. It took about 45 minutes for me to clean her up & get her back to her doctor. She was embarrassed as this was the very first time that had ever happened. She looked at me and said "I'm so sorry Amanda, this is worse than I ever imagined."
To say I'm scared is an understatement. I have no idea what's coming. I thought I was prepared for this. I've got a caretaker coming in, but I'm here to ask is this normal? Also, is this a bad sign of how fast things are going? The doctors don't say much, other than "let's try incontinence meds first", but I need to know what's going on. I'm scared that maybe the brain is deadening faster than I realized it would, but I can't have her go in for MRI's all the time... she's so uncomfortable as is, I wouldn't want to put her through that every month just so I can visually see her brain scans.
I know this is a lot, I've read a lot of others' stories, but maybe someone has been in a similar situation with a CBD patient. Mom and I have discussed the start of her symptoms & she believes this is her 7th year with this disease, even though she was only formally diagnosed a couple years ago.
Sorry for the details, but I feel like it was necessary to include.
My heart goes out to everyone else who's directly or indirectly affected by Corticobasal Degeneration.
-A
Written by
ARutzen
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Hi ARutzen!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 ere 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 our notes-document with our experiences and our informations by the private mail of this chat,hoping and wishing to be useful to you.
Hi A, I am reading this post as if it were our own story. We had our family member diagnosed two years ago. He had 'gone into himself' and we thought depression, he had hip x-rays and it was believed he needed hip replacement. Then his arm became redundant. We thought 'stroke'? We found a great neurologist, who quite quickly diagnosed him with CBD. He was in hospital while all tests were done. He went from hospital to post hospital care and with a care plan, home. He lives alone, so we had private care each day plus family.
Two years since 'official diagnosis' all the symptoms you outline in your story have occurred. Stiffening of upper body, rigidly so. He had a walker. His gait was tiny, small steps, slow. Incontinence came next, he said it was due to not getting to bathroom on time. He had a fall. Alone. We knew this was the beginning of the need for full time support . That was September 2019. He's in a care facility now, heartbreaking for us, but his needs could not be met unless we had 24 support. His cognition has slipped considerably. The neurologist outlined the steps and it's carbon copy of what she outlined. Eyes not focused, Dementia is very prominent now. He has daily hallucinations which the nurses calm him down. This aspect has happened fast. He has physio, he's had that for 18 months, but the reality is that this is his brain now, not his limbs. The physio is great, personal contact, movement. It's positive. However, his movement is heading towards wheelchair usage.
A number of months ago, he was engaged in politics, history, and ironically 'the brain' he's always had a fascination with the body / brain / science. Now, within 4 months, he's slipped into another space. He is not distressed, he is not in pain, and that means a lot . He is however leaving us slowly. He stammers to find words and his face contorts to find a word.
Moving to care in a pandemic is extremely difficult. Visits minimal, we can't fully get a sense of his day to day as we are on the outside. As challenging as that is, he has to have this support. The physical toll for a home carer ( or us ) is too much. He has two nurses who take care of his personal care. We kept him in his home as long as we could, we believe if he had a partner living with him, he would have been there a short time longer. His care home have had their vaccines and that is great. I attended a support group last year, now on line re covid. No-one copes well with deciding on care support, no one. When the pandemic eases we can sit with our loved ones in their supported living. All day, any day. Within yards, there's a nurse. The pain is now ours, not his.
This site is a honest portrayal of PSP / CBD. I hope you are all coping well today and that your loved ones are in a safe space in their illness. It's all we can ask.
Good morning, thank you for your kind words. Your story and mine are very similar & luckily I haven't had to seek full time nurse care yet, but I know it's coming. I empathize with you on how it is hard & the brain, that's another thing I pray for ironically... Just that maybe if she'll just succumb to dementia, maybe she'll forget what's going on and then I won't feel so guilty when I do have to place her in a care facility. Either way, it is emotional. I pray for you and your family during your journey with this as well. Best
The CBD will progress and you do not need frequent MRIs to confirm each stage, although if a separate process is suspected then one would be indicated. It is important to know that progression is not a straight line and today’s new difficulty may not be a forever thing. Illness, pain, fatigue, overstimulation will all worsen functioning, but there is a chance people will bounce back, until one day they don’t. Sometimes my mother (PSP/CBD) will have several episodes of fecal incontinence in a week and I think oh no it’s going to be like this from now on, and then sometimes she manages to make it to the toilet in time the whole week (anticipate after meals, and watch out for signs such as tummy rumblings and gas). Her urinary incontinence, frequent night awakenings, and restlessness actually improved over time. Sometimes there will be a lot of choking episodes and I think this is serious progression and but then she will be stable. Sometimes she wouldn’t be able to bear weight on her legs and I’d think we might need to get a hoist but she would bounce back.
Bowel incontinence and inability of the person (once they lose speech) to communicate are what I find to be the biggest challenges of caregiving. It helps to be prepared with cleaning and care supplies close at hand. Chux (disposable blue absorbent underpads) can be used to sit on, on the sofa, on the bed, on a wheelchair cushion, in the car, to prevent spread and contamination, and also for quick wipe ups of floor accidents. I have been learning how to deal with bowel accidents in the shower. That’s a tough one.
When my mother was at a similar stage to yours, using a walker, I did not quite anticipate her progressing specifically the way she has. I did try to anticipate what equipment would be helpful for the next stage and that has worked. It is a progressive disease but with the help of experienced caregivers, professionals, and people on this site who have experience and know how to handle all kinds of issues, you will be able to adjust and maintain her quality of life for as long as possible. Be sure to give yourself breaks so you don’t get overwhelmed. You’re doing a great job and an important one.
Good morning, I have noticed the "bounce back" with my mom too. Like you said, some days are fine and others you get worried that "this is it" where things will come to a drastic halt.
I'm learning to try to take breaks and ask for help. Sometimes I think I can do it all, but I'm slowly seeing that I can't. Thank you for your reply!
I have to agree with Martina, my neurologist and I agreed — no more tests. My husband and I are trying to anticipate what the future will bring as far as my growing disability (I am the one who has CBD).
Yes, we did. At first, we went through an agency and someone from there worked for us for several months. A lovely woman but she has very young school age children and as the Covid-19 lock downs went on, it became impossible for her to be here. Meanwhile, my cleaning lady, who is just a wonderful person, lost all her clients because of Covid-19 so she came to work for us 5 afternoons a week. While she does not have formal training in caregiving, she helped take care of her grandfather who had Parkinson’s. She has worked out wonderfully for me and I feel very comfortable with her helping me with some really personal stuff (like bathing!).
I am doing ok in general. We had to get an electric lift to help with some transfers but not all of them. My speech is slowing and less clear. But my left side is still unaffected so that is a really big help to me.
Thank you for your interest and I hope everything is good with you.
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