My mother-in-law, Peg was diagnosed with PSP and several symptoms of CBD in December 2013. Is it common to be dealing with both diseases?

[Buckeye7]

I haven't seen much on CBD....do they have the same progression or does one progress faster than the other?

[Gayly]

My mum was diagnosed with CBD at Coventry University Hospital after a lot of intensive tests and brain scans. When she moved to Worthing, the neurologist at the Hospital there said she had PSP after looking at her notes(they did not have access to all the advanced equipment that they had in Coventry). I think there is a lot of cross over and many symptoms seem similar in both conditions, my mum seemed to have elements of both.

I think every case seems different but all seem to go through stages of more rapid deterioration and then plateau for a little while. The nurses at the PSP association helped us greatly with support and advice about how to deal with the different symptoms at the different stages of mum`s illness.

Wishing you all the best.

[Buckeye7 in reply to Gayly]

Gayly, Thank your for your reply. This helps. Sorry to hear that your Mother s dealing with this terrible disease.

[quickgel]

I believe the differences between CBD and PSP are so subtle one requires to be a neurologists to distinguish between them and for the purposes of care and speed of progression it makes little difference. When my wife was first diagnosed it was said to be CBD and within 6 months the diagnosis was changed to PSP but this could not be confirmed without having the brain on a bench in front of him, and it was put that bluntly.

Reading the experiences of the contributors to this site the speed and nature of progression clearly varies between individuals. I found different symptoms would come to the fore and then recede and something else take prominence but the earlier symptom never quite totally disappeared so there was an underlying deterioration. It's a matter of taking every day as it comes and seeking as much help as possible to treat the problems as they arise. I hope you get all the support you need, there is a great deal of help available but accessing it can be difficult until you establish the right contacts. Kind regards, Jerry

[Buckeye7 in reply to quickgel]

Thank you Jerry...I deeply appreciate your response and encouragement. Jan

[ultramodern]

Bonjour, Buckeye , When writing for this forum I usually combine the PSP/CBD as in a lot of diagnosis the Neuro

isn't sure which so similar are the symptoms. I believe both diseases are instigated by our TAU proteins going ballistic....in the back of the neck...and devouring the nerves outer casing .Like an electrician who cuts away the plastic cover to get to the wire inside.

Jerry is correct in saying --as my bride was told--we'll only know which one you suffer from, at the autopsy.

In fact that's how I found out that she actually had PSP. Because Jo had gifted her brain to a Brain Bank for research into these abominable diseases.

Now for the commercial! To all our PSP readers!

As usual, I hereby make my heartfelt plea to all our sufferers and carers to please think of donating your brain in order to help researchers and pharma companies to one day find a cure for these dreaded diseases PSP/CBD.

I know it's not easy to speak about this. But don't leave it too late 'cos you need the patients' agreement.

But it's about the only weapon we've got. It's easy to organise...everything is taken care of.

Don't forget to stress the donation is to be used in PSP/CBD research.

And a great opportunity to really fight them.

With you in mind,best, brian.

[Buckeye7 in reply to ultramodern]

Thank you for your input....very informative. When you mentioned about the TAU proteins going ballistic in the back of the neck, got me wondering if bad whiplash, neck injury and chiropractic work on back of my mother in laws neck could have set things in motion. She began to show much greater symptoms of the disease shortly after her car accident occured and all the treatment srarted.

[jimandsharynp]

Not sure about progression. As I understand CBD it usually affects one side of the body more than the other which I don't believe is the case with PSP. Also, PSP had the vertical gaze issue which I don't believe CBD has. Don't know about progression but PSP, CBD, and MSA are sort of grouped together probably because symptoms are similar, for the most part. Never heard of someone with both PSP and CBD. Could it be the neurologist can't tell which it is?

Jimbo

[Buckeye7 in reply to jimandsharynp]

Hi Jimbo, thank you for your reply. The earliest symptoms were vision issues, her right hand not working and later having the 'floating, alien hand.' Weakness on right side. Voice changes, then imbalance issues. Falls became much worse. Eye issues worse, last night she said, things start to get black,especially when she is up walking. The neurogist and assistant noticed the mask like appearance immediately when they met her. She rarely blinks and can not look down. He thought definitely PSP, but also saw additional symptoms if CBD.

[jillannf6 in reply to Buckeye7]

well said

have donated my brain to the central bank in LONDON for research when i die

lol JIlll

[Pram in reply to jimandsharynp]

My hubby has the vertical gaze issue and that is how the neuro diagnosed it to be psp. the mris were all clean. but my husband has been affected on the left side of his body- in total, his left side is definitely weaker than the right. and after a fall, his left hand is totally out of commission. the pet scan report said they suspect CBD. the voice also is totally gone-- padma.

[Pram in reply to jimandsharynp]

vertical gaze issue-- my husband cannot look up- can manage to look down-- his eyes move a little to the right side-- left i am not so sure .. -- padma

[jimandsharynp]

The case of Jannet Edmunson who wrote the book "Finding Meaning With Charles". Her husband was diagnosed with PSP or CBD (I can't remember which) but at death the autopsy reflected the opposite as the disease. It is difficult to tell in some cases which it is. Hang in there for a tough ride. We are with you!

Jimbo

[Buckeye7 in reply to jimandsharynp]

Thank you for your kindness! Jan

[ultramodern]

Bonjour Buckeye! What you say about neck problems is an interesting theory for discussion and one that I recall has already had an airing on our forum. One that is very close to home in my brides case.

She suffered a bad whiplash in her younger days that gave her recurring problems for years.Regular x-rays showed neck cervicals in bad shape.

Then the balance problems with unexplained falls. Then a wrong Rheumatoid Arthritis diagnostic that took us all the way to Johns Hopkins Medical Center Baltimore.

After a week of in-depth examinations by the team it was thought one of the possible reasons on the falls was the squeezing of the neck nerves due to the old problem.

They advised neck surgery....this went very well except the second day after the op Jo's left arm became totally paralysed .She spent months in a re-education clinic for walking and the arm.

She never regained use of it till the end. Said it felt like it belonged to someone else. And the walking got worse.

We both had the feeling we'd opened up Pandoras Box.

A year later Jo was diagnosed with PSP/CBD.

Did the op actually do more harm than good?Did it trigger the disease off?

I don't really think so. Because today's collective Neuro wisdom says you can have PSP/CBD for several years before diagnosis. Also no-one has found the real answer.

And that injuries and neck surgery aren't the cause, otherwise thousands of Tom, Dick and Harriets who've suffered a whiplash in their life would be candidates!

Who knows...maybe they are!!!

Sorry for length of my reply,Buckeye, but ,darn it ,it's still a great hypothesis!!

With you all in mind,best,brian

[Hidden]

It is very difficult in the stages when the disease is becoming noticeable to distinguish between CBD and PSP and or other neurological disorders. Also whilst the terminology suggests that the illness is well defined, it is not. Very often the symptoms overlap. Research is still in its infancy and at the moment neurologist do still not know how to define the neurological disorders and how to classify them. Parkinson's which has been around for a long time as a 'defined' neurological disorder is nothing but defined. And if you put 100 people in a room with either PSP, CBD, Parkinson's, no two are showing the same symptoms. There seems to be a common denominator in all those neurological disorders, but the brain is affected in each person differently. So it is not uncommon that a neurologist initially cannot decide what the condition of the patient is. My wife was diagnosed with CBD in the early stages, but a year later it was decided that it actually was PSP.