My husband is declining rapidly . He still does not have a final diagnosis and his movement specialist made a referral to Mayo Clinic in Minnesota. Symptoms.began just over 2 years ago with incontinence , less engagement in conversation, and falling backwards. It took several months more until family and friends also saw a difference in him.. We have tried to accommodate his needs. At this point he can no longer get up from his life chair without help, get into a stair chair lift without assistance from 2 , eat at all with his right hand and even has problems lifting a sandwich with his left. He can no longer use a spoon or fork without great difficulty. He is stiff and has a hard time getting onto a toilet and tends to sit very crooked on a chair after he plops down. He cannot get his legs up to bed, walk without assistance and then not far. Two people can get him down the 3 stairs at our home, but it is hard and takes a lot of time as he freezes. It is hard for him to grip the bars we have on Wales, and then he cannot let go. He has now become bowel incontinent. At this point he does not seem to aspirate, but his breathing can be labored . He is still here and my kind and wonderful man, the hardest park is that he says less then a dozen words a day . He is still "in there" but says he finds it hard to talk. He will sometimes shake his head. When he does speak, his voice is OK and cleaR.
Can anyone tell me if the quick decline is more common in CBD. The course of his disease seems too fast for what I have read with PSP.
Thanks to those who respond. This community has been a wealth of information and even more importantly a place for understanding and support. As you all know , it's just not a fun life.
Karyn
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Karynleitner
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I found this article on Northwestern Medicine sponsored by that university; but all I did was google CBD symptoms. Since I don't know much about CBD, I thought this article might help .
One thing I do know, whether it be CBD or PSP, walking up and down stairs is a major hazard and alternatives to this activity need to be found. If the bed is only upstairs, many on this site have turned the front room or even large dining area into a bedroom, using if needed a hopital bed. If there is no bathroom downstairs, create a small corner that can house a portible toilet like a 'potty chair'. hygeine can be done with a wash cloth and a dishpan specifically for bathing. remember the old saying, SAFETY FIRST.
Corticobasal Degeneration (CBD) and progressive supranuclear palsy (PSP) are Parkinson’s-plus syndrome, meaning that they are diseases that share some of the symptoms of Parkinson Disease such as slowing of movements, stiffness, tremors, falls, and shuffling of the feet. They may both also cause changes in memory and thinking.
Symptoms
In addition to these symptoms, people with PSP also develop problems moving their eyes, called supranuclear palsy, a wide-eyed appearance, and difficulty swallowing. Unlike Parkinson Disease, people often fall backward instead of forward. They may also develop severe stiffness in the neck.
There are several variations on the name of CBD, such as corticobasal syndrome or disease, and corticobasal ganglionic degeneration. It is named after the parts of the brain that are damaged, the cortex, which is the outer part of the brain, and the basal ganglia, which are deep within the brain. Like Parkinson Disease, slowing of movements, stiffness, tremors, falls, and shuffling of the feet can be seen. Problems with movements occur on one side of the body, such as stiffness, shaking, or loss of control. People with CBD may be unable to get their arm to do what they want even if they know how. Sometimes, the arm on that side might move on its own, called alien limb syndrome.
Not all people with PSP and CBD develop problems with memory, thinking, behavior or language. However, in some people, these problems do arise. In fact, sometimes these problems are the first symptoms, and the more classic symptoms listed above develop later.
People with PSP can develop a loss of motivation. They may lose interest in their everyday activities. Problems may arise with attention and concentration. They may lose the ability to control their mouth to speak, called apraxia of speech, or progressive slurring of speech, called dysarthria.
People with CBD can develop loss of inhibition. They may act or speak rudely or crudely, or seem to lose empathy for others. They may also have difficulty with attention and concentration. A type of language difficulty where understanding grammar and speaking in full sentences can develop, or can be the first symptom.
Progression
All the symptoms of PSP and CBD get worse as the diseases progress. Eventually, people may become completely bedbound and unable to safely walk. Swallowing problems may lead to choking on food or getting food in the lungs, leading to pneumonia. On average, people with these diseases die within 5 years of diagnosis. Death is usually from complications of falls or swallowing problems.
Diagnosis and Treatment
How it’s diagnosed
CBD and PSP are diagnosed based on the signs and symptoms above by a qualified doctor. Oftentimes, an MRI and basic bloodwork is done to make sure that there are no other explanations for the symptoms.
Medications
There are currently no drugs that are proven to reverse the damage in either PSP or CBD. However, some medications can be helpful for symptom control in these conditions. Some people have improvement of their movements with Parkinson Disease medication, such as carbidopa-levodopa, but in general, they are less effective than in Parkinson Disease. For people with severe stiffness, muscle relaxants and Botox may be useful. Depression and motivation problems may respond to antidepressants. In severe disease, antipsychotic medications can help treat agitation, but should not be used except when absolutely needed.
Non-pharmacological interventions
Supportive treatment for problems with behavior, swallowing, speech and communication, falls and mobility are available. Many people with PSP or CBD benefit immensely from occupational therapy, physical therapy, and speech therapy.
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This is a wonderful extremely helpful reply! Thank you!
Sue
That description could easily be my dad who was diagnosed with CBD. While I won't venture to guess whether your husband has PSP or CBD I will say dad's decline has been like going down steps, not a gradual decline.
He stays relatively the same for a while then there is a sudden decline in ability. He stopped walking, with assistance, over the course of around 48 hrs. He just couldn't make his right leg move anymore.
That's exactly what is happening with him, and his right hand also. First he can't grip with it, then cannot let go. Now he eats almost entirely with this left hand. His right takes too much effort to move.
Help getting in and out of Chair, bed etc! Sitting on chair crooked. toilet almost impossible. Cannot walk without assistance. Freezes and grips his hands so tightly I have to pry them apart. Lucid conversation very seldom. It is all so familiar.
Only difference is my Barry is not incontinent. He was diagnosed in Nov 2016 but was treated for Parkinson's for 4 years before.
Hi there. That sounds exactly like what B has endured. In the hand, loss of coordination and stiffness, but has a vice grip before it goes alien. Our neurologist said this has been the most aggressive parkinsonism dementia he's witnessed. The Neuro initially called it dementia with Parkinson's symptoms in Mar 2014, but June 2015, it was officially CBD. In Feb 2016, I could no longer care for him at home so moved to RCU and now is failing very quickly. No longer wants to eat and extreme difficulty in swallowing. Chokes on own saliva even. B is still very much cognitive of conversation as well. He knows what's going on around him. Dreadful disease, but brave the man or woman who endures. It's heartbreaking to watch.
Hello karynleitner. What you describe is very similar to my late husband's symptoms of CBD. In particular the stiffness, crooked sitting and being unable to let go. With my husband we had plateaus of health. Then a drop in his condition. The intervals became shorter but the stage you describe was my husband a year ago. I think the greatest difference between PSP bad CBD is the dementia. CBD tends to include damage to frontal lobes so big changes to personality. CBD has far more cognitive damage earlier. Don't forget though even CBD has variants.
My advice to you is prepare for living downstairs. Plan now so it becomes familiar. Gather a tool box of helpers and resources. You have already started by writing a post. Take strength from the knowledge that others have gone before you and survived. You can do it together.
There is a large range of survival times in both PSP and CBD. We run the largest PSP/CBD support group in the US. Our experience is that those with CBD live longer than those with PSP but, again, the range is large. Honestly, it sounds like your husband still has a couple more years left....
Hi Karyn. My sister has CBD but after being on this site I see that she also has PSP. We took her to the Mayo in Minnesota in 2012 and received the diagnosis although it was also a confirmation of what we thought.
It sounds like my sister. Alien right hand and real hard at first.
It will get easier for you all. At first my sister was stiff and fought everything.
The Drs explained that her brain isn't doing what her body expects so everything is hard and unpredictable.
It takes thousands of times for you to learn to walk because all of you has to understand what each part of your body does to work together. Now the brain is off sync and the other parts have to learn how to deal with it.
He will eventually accept what is happening and his muscle memory will too. Then it gets easier for awhile.
The Drs encouraged us to stay in her house since all of her body knows how to navigate there. It helps her be calmer. It was harder out at new places.
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