I am a care giver for my mother and new to the site. We live in a rural farming community in the US in which there is very little support, limited health care and no pertinent information available so we are looking to connect others who are in similar situations. We are 4 and a half years into a diagnosis of CBD. Mom (age 58) is in what I would consider advanced stages. She is completely wheel chair bound, and experiences most, if not all, commonly listed symptoms found in online research. (Our health care team is basically lost on how to proceed as only 2 cases have been reported in my whole state.)
In the last few days, I have noticed Mom has been experiencing mood swings and emotion outburst which are very uncharacteristic. Words come to her slowly and she often gets confused or forgets small things. She has become withdrawn, and begun to avoid friends and family because "her condition embarrassed her." She has began to randomly cry even in the middle of conversation. She is frustrated, which is completely understandable. We work really hard to reassure her that people love and respects her as well as understand that she is doing very well with the hand she has been dealt.
I have found very little on emotional aspects of CBD and am wondering if others have experienced similar behavior. Is the just a new symptom or just a stage of grief that she may be experiencing?
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Welcome to this site. It will give you some answers for CBD, tho most are from people affected by PSP. The two are linked and you may find the website CurePSP is helpful. If you search CBD on this site too, you will find connections and symptoms experienced by those affected.
My husband was diagnosed with CBD 3 months before passing. He had a volatile temperament all the time I knew him, but stopped shouting and complaining suddenly 8 months before he died. Therefore it was difficult for me to say whether the ranting had something to do with CBD. However am certain his stopping DID have something to do with it! Think he found the effort of ranting too tiring. Our last 6 months saw many changes, mostly a rapid decline in ability to mobilize, follow instructions, read, and think. He must have had symptoms for about 2-3 years and seemed to start with apathy (disinterest in doing things around home and arranging holidays, etc) and an addiction to computer Solitaire ( he would play nonstop for hours rather than completing the 5-minute job he had gone to do).
Seems like each pathway is different but there is a wealth of info and connection here to make you more aware of what to anticipate.
When I first started I was also looking for answers and am sure you will find what you are looking for too, as well as a very caring and supportive community who understand exactly what you are facing now and ahead.
Take care
Jen xxx
You mom sounds similiar to my dad who is about 5 yrs into CBD, looking back. He sometimes has emotional outbursts but they don't last very long. They tend to happen when he is struggling to say something and just can't get it out. I've noticed more of an apathy about the actaul disease itself.
For what it's worth, lack of emotional control and inappropriate laughing and crying sometimes appear with psp. My guy had a fairly mild and brief phase of it. You might discuss antidepressants with her doctor. Try not to worry too much, it all passes.
Hi, and welcome. We are in rural NC, and my husband sees a movement disorder specialist in Winston Salem. We were recently signed up for a seminar in Chapel Hill for Atypical Parkinsonism (CBD, PSP, MSA), but due to a death in the family were unable to attend. The person who organized this event offered to send me the handouts, and I received them by email a few days ago. There was useful info there that might help you. If you could send me your email address, I would be happy to forward them to you.
I have tried and tried to get the files for the handouts to post here. No luck. I did manage to email them to jafarrar, as she sent me her email address. Anyone else who would like them can message me your email address and I will get them to you. Sorry I can't make it work to post here.
Ann I would love the information also if you don't mind. hibyjenny@gmail.com
My husband has had CBD about 4 yr. I'm in Texas your right that nurses and doctors and PT don't know much about it thanks to everyone and may God Bless us and our loved ones. Jenny
My dad had PSP and had emotional outbursts all over the board. Sometimes he was giggling and happy most of the day and then just cry suddenly. He sometimes would throw tantrums if someone wasn't there right away to move him to his recliner or bed. Maybe your doctor's can call the CORE institute or Barrows or some neuroloical place in another state and get some advice on how to treat. What state are you in? I'm in AZ.
My husband never laughs anymore . I really miss that we use to laugh a lot. He crys a lot now he is just about opposite of what he was like. Chip never cried before CBD. He has not walked in two years. Have a blessed day. Love you Jenny
Hi and welcome to this site, sorry that circumstances have brought you here. There is a wealth of experience within this group for you to draw on. CBD, PSP and MSA all have overlapping symptoms that can present at different times... your mother's behaviour is not any different than some. Emotional outbursts, crying, laughing and inappropriate behaviours are just some of the baggage that comes with these diseases. You'll find that most on this site have experienced this with their loved one and suggest that you talk to her doctor and perhaps prescribe an antidepressant as eastern cedar has said. The mood swings can be terrible and it is just as hard on the patient as it is on the carer. I have mood swings that would make Tarzan green with envy... and that's on medication. Just know, that it's not you or your mother...it's the disease. Take care xx
Hello, I'm in the US too and have the exact situation you described (I recently posted asking if anyone knew there to be a connection to Pick's which is more the emotional based manifestation -- but a lot of symptom cross over for sure). My mother is about at the same stage and does have the emotional outbursts. It is interesting for me to read other's comments and to see how identical the symptoms can be. She is embarrassed by her condition (didn't even want her sister's to attend the recent funeral for her daughter (my sister) because she didn't want them to see the state she is in). Mom laughs and cries, and is not interested in doing anything (activities a plenty at the facility she is in). She wants to go to bed at 6:00 pm every night.
I have yet to come across anyone who knows anything about CBD in our area except for the neurologist who suggested it. Mom's memory is good, so I find myself having to explain a lot about the condition to all the various people involved with her care. I find that those in care roles relate best to the subtelties of care/interactions with her when I phrase it as a "frontal lobe dementia" of sorts -- there is a lot of cross over in the symptoms and they know better then what to expect and how to handle situations when they come up (like lying, or outbursts, or suspicions, or even inappropriate things she might say to the aids).
We tried Cymbalta along with many other anti depression drugs before the disease really began presenting as my Mother suffered from depression when I was a youth. Sadly she is very sensitive to medication and had a reaction to it, ( and about everything else.)
These emotional aspects of CBD have been well-discussed on the CBD-related Yahoo!Group. (Send me a message if you'd like to join that group.) Besides anti-depressants (which you've tried), people have also tried the new PBA drug along with the big-gun, Seroquel. Despite the fact that she is chair-bound, can she exercise at all? What about meditation?
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Not swinging from the chandler yet!!!
Emotional Rollercoaster
Sister just diagnosed with CBD
This journey is a terrible one
