Hi,
My husband has been diagnosed with CBD and I do t seem to be seeing posts regarding it specifically. Does anyone have or know much about it?
He seems to have different symptoms and experience than I’ve seen and I would love to hear more about it from anyone that has or a family member who has it.
Thanks!!
Welcome to the site. CBD and PSP got lumped together here. Think it’s because they are very similar in presentation of symptoms. Don’t know how much reasearch you have done online. I had to google CBGD to make sure it was the same as CBD. It is. There is a Wikipedia page for it here:
en.m.wikipedia.org/wiki/Cor...
Feel free to ask any questions everyone is more than happy to share information.
Hi Patmimi, welcome to this forum.
Yes, there is experience with CBD here, and yes, symptoms can vary.
My husband had CBD for what I now guess was 4-5 years, but was only given a sensible diagnosis 3 months before he died.
If you long touch my name, you will be able to see my posts at the time. Likewise, if you use the search option under 'More' at the top right of your post, you can look for posts and responses to CBD.
Others may give you direct sites with more specific info on the disease. Cure PSP and other research sites will Aldo have more information.
I think you will find it useful for yourself to understand what to expect, although your husband may not want to know. However, there are cases on this site where unexpected events, such as pneumonia, can change expected pattern of progression.
Keep coming back here. This is a very supportive and caring community and I am sure you will find some answers to your concerns, and much-needed support along this journey.
Hugs
Jen xxx
Hello Patmini and Welcome to the site 
I'm sorry your husband has been diagnosed with CBD (same as CBGD). It must be a very stressful time, finally getting an explanation for what would have seemed mysterious symptoms, and while good to have an answer - it's not the answer you want! My husband had CBD: symptoms approx 2013 (maybe 2012) diagnosed as "either PSP or CBD" in 2016 and refined to CBD in July 2017. Died July 2018. I am in Canada.
I think the best information about CBD is on the PSP Association (UK) website. If you look to the right of your post here, you should see "related posts" from previous members with post titles like yours, so CBD posts will be listed there. As Jen says, use the Search Window in the upper right as well. Posts go back about 7 years.
We always tell new members that the diseases (PSP & CBD) take their own course with each patient. My husband seemed to me to be about mid to 2/3 of the way through what I thought was the typical course of the disease, then he suddenly died of a massive seizure.
My husband had speech and writing loss from the very beginning of the disease - yet many CBD patients never get this symptom. My husband had the "alien limb" syndrome, and overall physical weakness and loss of muscle control and coordination, yet he was able to be somewhat mobile right to the end. Some patients lose their swallow ability early - my husband ate until the night he died! My husband had cognitive loss early - not demential as such, but lost ability to manage numbers, sound stimulus, concentration, spatial management etc, but could follow politics on the news channel!
Best you can do is check everything out with your neurologist and stay in touch here: you'll get honest feedback and genuine support
Anne G.
Thank you for sharing. I’m sorry for the loss of your husband.
Jack has had cognitive impairment for 5-6 years and I thought from beginning he had Parkinson’s. His mom had it . His was not classic but hers was not either.
Jack has balance issues too but the biggest issue is that he “neglects” his left side. He doesn’t see on the left or use his arm. When he eats he will not eat from the left side of the plate. He doesn’t have swallowing issues now.
He has short term memory issues but long term is still pretty good.
He seems to have declined a lot this past year.
His speech is very quiet and he doesn’t talk as much but he still can.
Very frustrating and heartbreaking.
Sounds a lot like my G. I did find that keeping him as mobile as possible was (I believe) useful in prolonging his abilities overall until the end. We went to aquacise for as long as he could manage, neuro-physio and walks with his rollator.
One thing to consider Patmini, is to capture his voice while he still has it. I worked with a non-profit communication society to use adapted technology once he lost his speech, but I wish I had recorded his voice on my phone, iPad or whatever, while he still had it. I dread the day my landline unit kicks the bucket: Our OGM is the only recording of his voice I have 
Anne G.
Gosh! Anne, you brought back a painful memory for me, but maybe me recounting it will ease the regret of not having recorded Garth's voice. I have a land line and an answering machine. To this day I have NO cell phone. Anyway, I kept about five short messages from my son...mostly to remind me of his voice and its loss (as the disease progressed). His last phone message to me was totally non-understandable (gibberish). When I called him back, I told him that I couldn't understand what he said. He replied that he replayed his message and realized it too. That was his last phone message. Future calls, he had Carlos (his caretaker) call if he needed a quick answer.
Anyway, after he died, I would replay his phone messages. It was very comforting, and I was very careful. Then one day, I have no idea what happened but I went to delete a message some one else had left, AND I DELETED ALL THE RECORDED MESSAGES. I was soooo upset. How I deleted ALL the messages I have no idea!!!!! After the despair waned a little, I thought that maybe God had done for me what I could not bring myself to do..........that it was time to delete those messages from my son. He would do it, as I would never think the right time had arrived for me to erase/delete my son's voice.
I think this PSP is so horrible and that there is NO prediction on when the symptoms arrive or why some are escaped. My son, Jeff, died on the heels of the ABB-VIE and BIOGEN clinical trials. I kept thinking that If I had gotten Jeff into one of the trials it would have prevented his death. How foolish to think that. One of the caretakers on this site, whose partner seemed to be improving with one of the clinical trials suddenly died of pneumonia.
What happens happens, some good, some sad, some wonderful. We do what we can and forgive what we didn't. I have tons of photos of my son (from small to a week before he died). If I had a choice of keeping his voice or having the photos I will take the photos. And like all the other things that I tried (you know, "the ounce of prevention"), I am grateful, but like recording his voice, it got deleted.
Sending hugs and wishes for continued healing.........
Margarita, Los Angeles,CA, USA
Hi Margarita,
I can imagine just what you must have felt in that moment of the messages being deleted. But you have come up with a very philosophical way of understanding it and letting go of that "piece" of him. I admire you.
And I agree - I'd much rather have the pictures too
Hugs and blessings to you XXX
Anne
Hi Anne, I have NOT been receiving the PSP posts or messages for several days, but realized I can access by clicking on an old one still in my IN-BOX. In the past others have posted of this difficulty, but this is my first time. Anyway, that's how I found out you had responded.
You can't live past 60 without developing some philosophical mechanisms for coping. It's what gets us thro. When I lost my recordings of Jeff I was devastated. I called a close friend and she said she KNEW EXACTLY what I was feeling. She too had experienced precious recordings. Friends helping friends to share the same/similar experience.....as we do on Health-unlocked.
Time for church..............
My husband also had Parkinson's traits for a couple of years, not picking up one foot, 'wooden' poorly coordinated movement. He fell a few times, in the garden, each time up a ladder trying to prune or maintain the property. I never witnessed any, just the aftermath of washing and plastering his wounds. Doctor never picked up the symptoms until after checks by a heart specialist for his shortness of breath and difficulty exercising. My husband also had a pacemaker fitted, and had asthma, diabetes and high blood pressure.
I also noticed a more marked decline in his abilities during his last year, his Parkinson's score tests got worse and he spoke more quietly, and was not the wizard mathematician he always was.
During his last 6 months he seemed unable to maintain stable blood pressure, sitting and standing up, his temperature sometimes went up for no reason, and he seemed to have periods of exhaustion and slept a lot.
I suggest you keep a diary of the changes you see in him, as I think you will find it helpful to track some sort of gradient of change. I felt when changes seemed to be happening at a faster rate that this was an indication of a faster progression and it helped to look back and see what I had noticed before. Sometimes you can kid yourself you have been mistaken - because you don't want to believe it.
No two patients seem to show similar changes or rapidity. I tried to think ahead and anticipate the need for aids, assistance in care, upgrades to home. It did not always work and I know how distressing and heartbreaking that can be!
We can only do our best, and care and love them!
Hugs
Jen xxx
Great advice and I will do that!!
Hi my husband was diagnosed with CBD in 2015 I am new to the site but happy to share info x
Welcome to the site. Dad had an observational diagnosis of CBD in Jan 2016. He had symptoms back least 3.5-4 years prior to that. He lived with me and I was his primary care giver for around 3 yrs, now he is in a nursing home.
Start investigating what types of medical care options you have in your area and types of outside aid/help there are. At some point talk to your husband about any end of life requests he has and what type of medical care he'd like to have. It's better to get this done now while he can still convey his wishes in an informed manner.
Get involved with an occupational or physical therapist to work on an exercise routine, it seems to help most people stay active longer.
Start thinking about where you'd put a hospital type bed or how'd a wheelchair will work in the home.
Try to get someone to help you by coming to let you get out of the home so you have time for yourself, you'll need time to "recharge".
Ron
Patmini,
I’m sorry to welcome you to this site, but I believe you have found an invaluable resource. I too initially thought this to be a PSP site, but have found that many are here because of CBD. Even with the CBD diagnosis, there are ranges of symptoms. I joined when my wife was diagnosed with CBD after previous misdiagnoses. She lost her fight with the disease in June of this year.
My wife’s CBD symptoms were similar to your husbands. Cognitive, quiet speech, loss of the use of left side of upper body, however these continued to get worse. She was different from others in that she was very physically fit when the symptoms began and had run a marathon 10 years before her passing. Looking back, I could remember some very minor cognitive issues coming up, but seemed normal 7 to 8 years prior to her passing.
I have found on this site a wealth of information from navigating the UK health system(I’m in USA, so didn’t help me, but many are in UK), managing symptoms, but most importantly, caregiver support. I have friends here that I have never met, but have helped me through difficult times.
Some suggestuions:
Voice physical therapy. Slowly loosing her speech was probably the hardest aspect because she loved to talk. She was trained in LOUD. Not sure if it helped, be she worked hard on it.
Physical fitness/exercise. Seems to be the only thing that helps those with CBD as the drugs we tried never seemed to work.
Power of attorney. My wife lost her ability to write and sign her name and just to get things done we needed this.
And lastly, but the most difficult is final wishes. My wife realized last October(once she receive the CBD diagnoses and rapid decline in health) that her demise was imminent. While she still had some voice she told me her final wishes(cremation, who to speak and lead at her service, where to place ashes, etc.). It made those descisions easier on me and our children when she did pass.
I’m sorry for too much info. Please know that even though this is a rare disease, that you are not alone. There are others that care for you and your family and are willing to help.
Prayers of peace, strength, and wisdom as you care for your husband,
Bobby
Hi Patmimi, I was diagnosed with cbd last October. It 4 years now since I first something wrong ! If you click on my username you see my first post. Jeanette x
Thank you for the information and it wasn't too much. I'm relieved to talk to anyone who has heard of much less lived through this disease.
My husband is still very much able to speak however he doesn't as much except with me.
He isn't able to walk very well anymore. His vision is poor and so he mostly listens to the tv .
He has difficulty finding the bathroom and has a lot of accidents.
I'm not sure how long he has had this but I know at least 5-6 years of not longer. The last year has been a bigger decline.
Was your wife bed bound toward the end? Did she have difficulty swallowing? Jack still eats well but I have to cut up things for him.
I'm just so wanting to know what to expect next?
Thank you for your help!
Michelle
It's so hard to predict exactly as everyone travels a slightly different path at their own speed. My hubby lost cognitive strength and physical coordination slowly over 3-4 years, then at increasing speed over year 5 until he was falling a lot, had motion-freezing periods, couldn't operate the phone or microwave or tv remote, could barely stand on his own, could only shuffle a bit with his walker, was very weak (...but ate 3 meals right til the end!...) and then unexpectedly had a massive seizure and death. It doesn't match anyone else's history exactly (the end part) but the decline is pretty common, I think.
Hugs to you XXX
Anne G.
My father had CBD this is a site, I found this web site with information about the disease.
rarediseases.org/rare-disea...
Hope it helps give you some answers.
So,sorry my father has it too and,unfortunately it’s a real nasty rare neurological disease. Prayers 🙏🏻🙏🏻🙏🏻🙏🏻
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