First Post - My father has just been diagonsed with CBD

[MargeryDaw]

Hi everyone

Just wanted to say hello and introduce myself and give a bit of background, I apologise for the long post!! My father was diagnosed with CBD a month ago and we as a family are still trying to get our head around it.

My father's speech has been slowly getting worse over the last 3 years (slurred). My children have had trouble understanding him for 3-4 years and stopped being able to understand him for 2 years. I told my mum and we just put it down to him getting lazy! I then had real trouble understanding him a year ago and said to my mum that she needs to take him to the doctors. I thought he may have been having small strokes and was worried that a big one was on it's way but he didn't go to the doctors.

He is a window cleaner and he had a couple of falls off the ladder over the last 2 years, with a nasty fall in February this year where he had to have stiches in his head! The staff at the local A&E noticed his speech and said we need to take him to his doctors. More urging to my mum but he still didn't go. We had noticed that he was running the window cleaning round down and people were ringing asking where he was as they hadn't seen him for a while. People who hadn't seen him for a while were asking if he had had a stroke, but still no doctors.

Finally my mum took him and the next day he was in hospital having CT scans. It was a real shock when we took him in as he done very badly on the co-ordination tests, memory tests (he didn't know who the queen was, what year it was, if it was day or night!!). This really knocked us as we didn't realise it was this bad. He was in hospital for two weeks after which they diagnosed CBD. They were amazed that he had been working up to the day before he went into hospital and I would hate to think how hard he had been trying to be 'normal'. My mum commented on how quickly he had gone down hill, but I said that I think we are now seeing him how he really has been, but he had been hiding it. He told mum that he fell over the stairs one night and woke up in a pile!!

He has now given up work mum is looking after him, although she goes back to work next week. She works nights, so my sisters and I will sleep the nights she works to be there. He gets very upset if he thinks he has to be on his own.

His is not sleeping very well at night and is usually awake and up around 4.00am and then very tired in the day. We have noticed that his speech, balance etc is much worse when tired. He resists sleeping in the day as he thinks he then won't sleep at night. I have tried to explain that I think if he has a structed hours sleep in the day, it may be better for him. Have others found this?

Also, my mum has noticed in the last two weeks that every 20-30 mins he starts coughing a lot as if trying to clear this throat. Could this be the start of the swalling issues we will face. I saw him doing this last week and it's as if he suddenly notices he has a build up in his throat, but can't swallow it and has to cough first to clear his throat and then swallow. He has no trouble eating at the moment though. He is having stiffness/cramp in his right leg a lot and mum said it gave way when he got out of bed the other day and he fell.

I have read quite a bit on CBD and it is frightening on what is to come and having not idea the timescale of things. It will happen when it happens I suppose.

Thank you so much for taking the time to read this very LONG post, it's just good to write it down and speak to people who know what we are going through and what we have to face.

[shasha]

HELLO MARORIE - I DONT HAVE CBD BUT I DO HAVE PSP WHICH IS PRETTY AWFUL TOO - I AM CARED FOR NY MY WONDERFUL HUSBAND FRED WHO IS 77 - I AM 67 - SO IF YOU WANT TO TALK I AM HERE AT ANY TIME - IN THE A.M MOSTLY AS I GET VERY STIFF AND SORE IF I SIT AT THE COMPUTER FOR TOO LONG.....

[dorothy-thompson]

Hi Margerydaw

Welcome to the site. My husband was diagnosed with PSP in October 2010 but looking back, as so many of us say, it probably began in 2006. So all I would say to you and your mum is always look ahead, ask for as much help as is available and on paper it is considerable. Do not think you will "manage" on your own because chances are you won't, keep on this site because you will get a lot of help and information, join the organisation for CBD.

Good luck

Dorothy thompson

[nakkdo]

Hello Margery

my husband has recently been diagnosed with CBD. I too dont know where this will take us.

His symptoms first appeared approx 3-4 years ago, he forgot how to put his tee-shirt on, had trouble fastening the zip on his Jacket and shaking on his left side.

He has seen 2 different neuorologists in different health areas, both have confirmed CBD and basically that is it. The only way I have found anything out is by research on the internet, all my husband says is "this is the hand I have been dealt" He doesn't want to know what may or maynot come, our children just keep saying "he's not that bad" get on with it. We live in a small seaside community and my husband isn't what you would call a sociable sort of person.

Sorry for going on, I am getting upset now, so I will sign off for now.

Debbie

P.S. please may we keep in touch

[jimandsharynp in reply to nakkdo]

Nakkdo, You are on the right tract and your husband as well. Here's my thoughts on CBD, PSP, etc. What difference does the stage the person is in make? You can't change it. It can't be changed. Besides a person in an early stage could get aspiration pnumonia or have a bad fall and die. Worrying about what is coming next or what stage is non-productive in my eyes. Just live a day at a time, deal with whatever the day brings, don't look ahead. There is an excellent book by a woman whose husband was diagnosed as CBD. It details what they tried and what helped and what didn't. A very helpful book. "Finding Meaning With Charles" I believe is the title.

Jimbo

[MargeryDaw]

Thank you so much for your replies, it means a lot. We have a consultants appointment in October, but I think that is just a routine follow up. I suppose it's just a waiting game. I have also done lots of research on the internet as that seems the only place to go. Nobody I speak to has heard of it and I don't think they understand what is in front of us. We are a close family, mum, dad, me and two sisters and a brother. We lost my other sister to breast cancer 7 years ago which my dad took very badly and has never, ever come to terms with it. I do wonder if this could have been the onset of CBD. Stress and grief can do funny things. Thanks so much for your support, it means so much and to know we are not alone. My mum and dad have been away on holiday the last two weeks and mum said that it could be their last 'decent' holiday! That's so sad

Of course we can keep in touch Nakkdo. I think people only see the very mild side of things when not spending a lot of time with the person. It's only when you are with them lots and you see the little things that are diferrent, but these build up to such a big difference (if that makes sense). Love to you x

[SharonAB in reply to MargeryDaw]

Dear MargeryDaw and Nakkdo,

My suggestions to you - Continue to use the Internet - it will 'humanise' the situations you are going through and give you a great 'sounding board'. If forums had been around in 2004 (when my husband John first starting to change) and I was looking for answers things would have made a lot more sense for me and hopefully (?) easier to handle. Even though you will probably read news or write things that may not be great to hear, you may find like me and others it gives 'clarity of mind' that you are doing the best you can.

John's sleep pattern was one of the first things to go 'off-track' that would leave him, me and our daughter 'worse for wear'. (That , and some other factors are why he longer lives in the family home). When I first read about PSP, MSA and CBD I expected John's illness to progress in quite different ways to what is 'reality for us'. I thought and was advised he would sleep a lot. Instead John sleeps very little, and never switches off.

Every 3 to 4 hours he needed to be engaged in some activity. He has no real concept between night and day or appreciates the effects on others. Have since found out that lack of empathy may also be the torment of torture in oter sufferers? When John was living here (til about a year ago) I could pretty much set my watch (this included when he was still working) on when he needed to be 'out and about.1am, 4am, 7am, 11am, 2pm, 5pm, 8pm, 11pm. For John 'this also means 'literally' not only around the home outisde or in the kitchen, but by car and later on (and still is ) by electric scooter around our city.

With the need to do things, I thought (along with his work colleagues) he was forgetting things and trying to remember and suffering from depression? Now I tend to view it to the other extreme - John's brain is always switched on working. This is because messages are always having to find new neural pathways as the old ones are blocked with tau protein. Our 10 year daughter describes his brain like a ball of wool with too many tangles (Yes we all have our layman terms! and she looks at the internet too!)

John's coughing has been the cause of different things along the way. eg illness, to obstruction, to saliva ...What has helped John is the instruction from a couple of speech therapists who specialise in neurological conditions (one was through our local hospital). In many ways its about giving constant attention to eating, drinking and swallowing habits (he is still on a soft food diet).. Good posture with back, head and neck, chewing well, swallowing fully with each small mouthful, not combining liquids and solids. and no talking whilst eating. John now also has to give regular 'forced' quick soft coughs to ensure the food travels correctly. There are also foods suggested he not eat eg. watemelon and peas (because of texture differences in the actual food)

Regards,

Alana - Western Australia

N.B. Yes, I write long posts (I tend to jot down things as they 'spring' to mind, so I guess you are my 'sounding board' for me today - so thankyou for putting your post up for us to read and reply to.

[Theson in reply to MargeryDaw]

Hello MargeryDaw

When I first read your first post it was like reading a carbon copy of how my dad became struck down with this illness. Like you, I questioned did a 'shock' bring it on. My father a few years ago took the death of his brother really bad. Since that day the symptoms became very apparent and we too go him checked out. Unfortunately CPD was diagnosed. Make sure you are in contact with PSPA who will advise you well especially in obtaining grants etc to help you adapt the home. Also you should keep all your dad's medical letters in one folder and if he ever needs medical attention the folder goes with him. Explaining this rare condition. Why? Well you would be surprised in the number of medical professionals who have never heard of it. Also make sure if you feel comfortable to raise awareness. We have had friends run the marathons, fundraising events and charity golf days to help support people who have this disease and in turn raise awareness. More people need to know about this disease which will in turn will help towards research into PSP and CPD. For us the proactive approach is the one positive thing that has come out of my dad having this disease. More importantly we as a family have got closer to each others and now spend more time with each other supporting Dad and Mum.

Thinking of you and your family.

Theson

[jimandsharynp]

Nakkdo and others. Not all patients have the sleep issues. My wife is about five years into PSP and no sleep issues. Fatigue YES and a nap for 1 1/2 to 2 hours in the afternnon are mandatory. If missed she is a "basket case" by night. There is syndrome in some brain diseases called "Sundown Syndrome". My first wife had CJD (brain disease) and had this problem. We finally gave her mild sedation at night so she slept and didn't roam. You can also purchase a warning pad that goes under or near the person. If they move off it a warning alarm lets you know they are on the move. I've heard you can get one to put by the bed that when stepped on alerts you. Hang in there we are here to help and offer support.

Jimbo

[nakkdo in reply to jimandsharynp]

Hi jimandsharynp, I have managed to purchase the book and I am well into reading it. thankyou