Can you tell me what sort of symptoms of CBD you are experiencing ?

[tisha1953]

Most of what is talked about is PSP symptoms, as i have CBD i am interested in other symptoms experienced by others?

[jimandsharynp]

If I'm not mistaken PSP and CBD have similar symptoms. However, we have to remember that not all patients have the same symptoms or have them at to a lesser extent. I read a book by a woman whos husband was diagnosed with CBD but when he passed away the biopsy of his brain confirmed he actually had PSP. I believe the name of the book is "Life With Charles" but I'm not sure. Excellent book because she describes all the things they tried (some odd) in coping with the CBD he was diagnosed with.

[tisha1953 in reply to jimandsharynp]

Thanks Jim for your reply, i was just wondering if any body else had the same sort of symptoms that i have, i know some of them are hard to describe, they change to some degree each day, some are worse than others, its mainly the weakness in my legs and arms, mainly on my right side and now i am loosing my balance more. Also my short term memory is getting worse and i get confused, i forget silly things and get confused with simple tasks, tried adding up sums the other day, i was convinced i got them right but they were all wrong!! You just don't realize what is happening until you test yourself. I am lucky, i have my husband and son with me, it must be hard for people that are on their own. I wanted really to find out or get some idea what to expect, so i can plan the future, you hear a lot about psp but not cbd, i know they are simular but i don't know the difference.

I will look out for the book, thanks Jim xx

[jimandsharynp in reply to tisha1953]

Tisha, I'm glad you have great support with your hubby and son. My wife and I are handling the PSP disease a bit different than some others. We decided to not get all wrapped up in what stage she is in, what's next, what if she ______ (fill in the blank). We've decided to take one day at a time. We really don't discuss PSP any more than we have to. We find that there isn't much you can alter in this terrible disease so why not be happy in your status whatever that may be, at the time. I do monitor this site, the USA site, and a couple of other groups devoted to PSP. Glad you are going to look for the book. You'll find it helpful. My wife, to our knowledge, started about three years ago with a couple of falls but mostly with balance issues. After three years the falls continue, her handwritting is unreadable, voice is week and hard to understand, walking is possible but only around the home, swallowing is ok but some coughing when drinking liquids, memory is fine but response time is VERY VERY slow, solid food is not an issue, eyes are dry (low blink rate). Where are you located? We are in Florida, USA.

Jimbo

[tisha1953 in reply to jimandsharynp]

Thanks Jimbo, your comments help a lot, i agree you should takeone day at a time, i can still do a lot of things, so i should get on and do them. It doesn't do to dwell on things. I have been diagnosed now for about 2 years but have had symptoms for a few years before that. i had to give up full time work last August because they thought i had had a stroke, it was migrain varient but it left me poorly and weak and agrivated my CBD to the point of not being able to return to work. I miss working, i like time at home but my husband looks after me too well!! He won't let me out of his sight, he hates it if i go for a coffee with a friend. At least at work i got out the house for a few hours with out him fussing. I should be gratefull that he wants to care for me, but i am not ready for that much yet, i still want my HUSBAND, not a carer!!

Oh well, one day at a time, take care Jimbo, your wife is lucky to have you xx Trisha I live in UK near London (Watford)

[jimandsharynp in reply to tisha1953]

Trisha, I have two cousins in the UK. On lives in Lane End which is near High Wycombe and the other lives near Malmesbury. Looking back to our visit three years ago the PSP was already noticable in Sharyn. Like most close family none of us took notice but the cousins did. I see that you and Sharyn, my wife, are pampered princesses. Pampering is what love is all about. Helping each other, caring, sharing, etc. I told Sharyn that if I could take the PSP off her and put it on me I'd do it instantly, and I meant every word!!!!

Jimbo

[tisha1953 in reply to jimandsharynp]

have taken your words on board, i know i am lucky, i wish i could repay him in some way, but as he says, he is repaying me for all the years i have looked after him, i can't get used to not carrying it on, i should sit back and enjoy the attention, just wish it was under different circumstances. We don't live too far from High Wycombe, it is a lovely place. About half an hour away.

We visited my Brother in Australia about 3 years ago and stopped in LA for 4 days on the way, it was fantastic, the portions of food were so big, 4 eggs for breakfast every morning, i put on a lot of weight

All the best, lol Tisha xx

[jimandsharynp in reply to tisha1953]

Since we last posted my wife said "Sorry to be a burden" and I had to explain that she wasn't and I didn't consider doing for her a burden or problem. Hope she believes me. Must be tough to be on the PSP end of things.

Jimbo

[tisha1953 in reply to jimandsharynp]

I am sure Jimbo she appreciates everything you do for her, sometimes our partners help us beyond the call of duty, but if the roles were reversed i am sure she would do the same for you. I also apologize to my husband but he says he doesn't mind doing it for me and if he didn't want to do it he wouldn't, it is nice to be loved that much to be taken care of. But it still doesn't stop you feeling a burden, you just need to keep reassuring her. and tell her how much you love her, All the best, look after yourself , Tisha x

[springbank]

My late husband had CBD - the main difference is that CBD affects one side more than than the other. He was right-handed and this was the poor side with CBD. All other symptoms were identical to PSP. Hope this helps you to understand. Best regards.

[jean2]

hi Tisha

my husband Dave has CBD. He has been diagnosed for about 6 years. He has alien limb syndrome on his left side which means he can't control his hand and unfortunately his right hand is beginning to do the same. He has trouble with short term memory and does get frustrated as he can no longer do anything for himself. He is extremely stiff and his body does not always respond when we want him to hold something or bend his knees or stand. He bends foreward when sitting and seems to have difficulty holding his head up at times. He also has difficulty saying what he wants to say so there is a lot of guesswork. He listens to the television now rather than watching it because of the bending foreward. He is in a wheelchair outside now as he can't walk very well or in the right direction. He has no coordination and his eyesight is also affected now as well. However these things may not affect you as everyone seems to be affected slightly differently and he is generally very even tempered even with everything he has to put up with and he loves to have company and understands most things. we have 2 dogs and he loves them and is always talking to them and about them.

Jean

[piggyinthemiddle]

Hi Tisha,

My Dad was diagnosed in 2009 but we think he has been living with CBD for a lot longer than this. The first thing he noticed was his ability to concentrate lessened. We noticed that his speech appeared slurred and then he started to have trouble moving his left arm. That was when he got the diagnosis. Now, just four years later he can't speak and his left side (arm and leg now) don't operate at all and his right arm will randomly move. Mobility is a problem but, for us, the communication is the worst thing. He tries to use a light writer but finds this incredibly frustrating. He is unable to tell us what he wants or to have a conversation.

In PSP backwards falls and up/down gaze is a big issue but this isn't so prevalent in CBD sufferers. (Dad does fall but not backwards and not as much as a PSP sufferer who will fall 20 times a day if allowed to move themselves!).

I hope this helps. In my experience, I would suggest that one of the most important things that you can do for yourself at this stage is try to get some things in place now so that you can and communicate with your loved ones at a later stage.... hopefully, you'll have a good speech and language therapist to help you through this (and it's never too early to get them and an occupational therapist involved)

Take good care Tisha

Piggy - Hampshire, United Kingdom

[tisha1953 in reply to piggyinthemiddle]

Thanks Piggy for your reply, i am (i think) not that bad yet, but day to day is different, i can get up in the morning with big plans of what i am going to do, house work wise, i start off, but the more i try to do, the less my body will cooperate, my back goes into spasm and the tremors start in my right arm/hand, i have to sit down for a while then i can do a bit more. I am trying to sort things out while i can, clothes ect. and declutter !!! Trouble is when you get so tired you keep putting it off. I do have an OT on board, they are very helpful, i go to meetings every few months at the neurology centre. My speech is ok but a do get words mixed up, the wrong way round !! My husband loves to correct me and my memory isn't as good. My walking is deteriating, i cannot feel my right foot, especially when walking outside and i lose my balance.

I had to give up work last August, i miss being busy!

Take care of your self

Tisha, Watford, Hertfordshire x

[piggyinthemiddle in reply to tisha1953]

I remember when Dad was at this stage. He would have good days and bad days. He gave up work about 4 years ago and I'm afraid the deterioration has been rapid. I am so glad that you have got some help at an early stage (and that you are accepting it - My Dad wouldn't to begin with) and that you have someone to look after you. Live life and keep your sense of humour! ( and post on here when you feel you are losing your sense of humour) - we'll all be here for you....

Piggy x

[Cazmat]

My husband was diagnosed with CBD earlier this year after an initial diagnosise of PD, he has had symptoms for about 5/6 years we think, it started with mixing up words and the inability to spell even simple words then the stiffness in his right side. Now he can no longer speak and has great difficulty communicating as he gets very confused and can't always recognise letters and is no longer able to use a keyboard so the computer is out. He also struggles to walk and is now having falls he manages around the house but can't manage any distance. It is extremely frustrating for him as he can no longer do the things he enjoyed, he won't go out if he can help it and he struggles to feed himself. He also gets confused with yes and no answers getting them mixed up causing even more confusion. He suffers with excessive sweating but at the same time complains of being cold. He cannot dress or shower himself and all of his daily care now falls to me although this is the way we want it it can get very frustrating at times.

We have been married for almost 38years and I dread the day when he is no longer with me.

Sorry if I rambled a bit this is my first post and not sure what to say.

My thoughts and prayers are with everyone living with this awful illness

[tisha1953 in reply to Cazmat]

Hi, ithas been 8 months since writing something on here, i think i am pretty lucky as i have only deteriorated a bit, my walking has got worse, can't walk as well, get tired and the tremors have got worse, i have stopped my meds as the side affects were worse than the decease, i kept getting dizzy and mixed up, i seem better without them, not sure if doctor would agree, but i think you know your own body. Sorry your husband is getting worse, sounds more like the symptoms of psp? It seems he has gone down quickly. Mine started with a weakness on the right side, i had a limp then my hand would not do as it was told. i had difficulty writing and using my right hand, it felt numb inside as my foot also, if that makes sense. So far my speech is ok apart from getting quieter but i do get forgetful and confused sometimes. Eating is ok as long as it is not too dry, but my husband says i snore more!!!

I hope you have a good support network, it can get very difficult and depressing, i try to make the most of what i have left, hopefully a long time yet, i refuse to give in to it xx

[Cazmat in reply to tisha1953]

I am lucky to have fantastic support family, friends & PSPA and yes it can get very depressing for both of us. We do try to make the best of things but it is hard with the deterioration being so rapid, no sooner do you get used to dealing with one thing another comes along and kicks you when you are down. But hey ho we'll carry on there is always something to look forward to as we have seven lovely grandchildren to keep us going.

Keep your chin up our thoughts and prayers are with you xx

[tisha1953 in reply to Cazmat]

Thanks Cazmat, do try and have a good Christmas, grandchildren always make it all worthwhile, unfortunately we have none yet, but we are hoping for that blessing before i deteriorate too far. x

[SharonAB in reply to tisha1953]

Dear Tisha,

You mentioned weakness in body strength so I wondered what it is lke for you to type. With what you have written it looks great to me, however I guess you may be feelng a little tired (Is that an understatement)?

My husband (with PSP) uses computer software called 'Word Q' what ever he writes 'on screen'.

An OT recommended it to John and it certainly has been valuable.

The software cuts down on keystrokes in a major way which means John can still send emails and write letters to his family and friends

(NB If you are thinking of purchasing this product or something similar remember that you need to make the time to build on and create your own dictionary.

John trialled the product for three months before purchase - definitely worth it - cost a nominal amount of money and gave him a renewed interest in communicating.

Regards,

Alana - Western Australia