corticobassal degeneration

[bacardi1]

Corticobassal degeneration....... i am new here, and my mum was diagnosed with this awful disease 3 years ago, its lonely, not many people know about this, anyone out there in the same position as me??? Sometimes just talking to someone who knows what you are going through helps.

[doglington]

Welcome, Bacardi. You're in the right place. My husband had PSP - similar. But there are others here dealing with CBD

You are right. Having a place to rant and wail and get tips about coping is a lifesaver. There's lots of know how here.

love, Jean xx

[Marie_14]

Bacardi yes we know about CBD. We have some people with CBD on the site but it's mainly carers. You have come to a great site where people are friendly and really helpful. There are also past carers such as Jean and I. Although my husband had PSP and MSA. Nothing is too odd or weird to ask. We have all been there and there are lots of current carers who are having the battle right now. You will also get lots of information which may help make life easier for your Mum and you.

Marie x

[Mikey12345]

Bacardi1,

Welcome to the group no one wants to have to be a member of. My husband has CBD and I have received more help and information from this site than anywhere else.

It's extremely lonely when you can find no one who understands what this disease does to everyone associated with it. On this site we can ask questions and share our experience with others. It's been invaluable to me and I'm sure you'll feel the same.

Hugs,

Liz

[easterncedar]

Welcome, Bacardi! - I was in a very isolated place when I first found this site, and it was a lifesaver. It's a great community. You aren't alone. There's usually someone to talk to here. Really. Take advantage of it. Best wishes, Easterncedar

[raincitygirl]

Hello Bacardi and Welcome!

I am a CBD spouse: Hubby was diagnosed definitively in 2017; and has had symptoms for about 5 years now. We are in Canada, and there are CBD patients and caregivers here from all over. What country are you in? If you prefer not to say, no problem

How is your mom doing? Is she very disabled or making out ok? One of our community who has had CBD for 5 years is travelling on his own in Spain at the moment! The disease takes a different route and speed with different patients, even though there will be common things that everyone experiences eventually.

This site will give you loads of practical information. The historic posts are very useful (look for the Search PSP Association window in the upper right corner of the screen, or type your question and add Health Unlocked in the Google search window.

I look forward to hearing more from you

Anne G.

[LostinHeadSpace]

Hi Barcardi,

We're a potential CBD family, still in the diagnosis stage. A while back there was a past post of who on the site had CBD (as opposed to PSP, etc.) There are good people here!

[Spiralsparkle]

Hello

My Mum has CBD. Diagnosed in 2016, symptoms since 2011/12.

We are in UK and this forum is amazing. You won't feel as isolated now.

Hugs x

[Kaka1234]

hiya

my husband has CBD we were diagnosed april 2016 but 4 years into it.

when im worried or hv questions i always pop on here and its a fantastic site as their is always someone you can relate to and understand the illness better.

speak soon x

[Kevin_1]

Hello Bacardi1

Welcome to a very supportive and friendly forum.

There is a lot of overlap between PSP and CBD from the care and services side. So a lot of the posts here may be of use to you.

It's helpful to know what country you are in. That way when replying to issues you raise folk here know what legal system and health services apply. There are folk here from about thirteen different countries.

Anyway welcome - no post is too dumb and ranting at the struggle of caring is entirely acceptable.

Wishing you and your mum the best

Kevin

[Binababoo]

Welcome Bacard1! I am going through the pain in my right arm and shoulder and hand due to CBD

I am under the care of my family and neurologist and I live in the UK

My family is going through a severe phase as they don’t know what the disease is

They are learning about it as I am so don’t feel alone xxx

[Joandbear]

I was in your position 3 years ago. I had no idea what I was getting into when my husband was diagnosed in May 2013. I researched and researched until my eyes were red and I was so tired. I decided to try to enjoy his beautiful soul instead of chasing “maybe a new test, drug, treatment “.

He passes peacefully in September 2015 and I miss him terribly. I hope you have many more enjoyable days with your mom. Jo, New Mexico

[Ettavb]

Mother has CBD dx’d in 2015 - first symptoms 2004 (dx only came so much later because mom refused to believe she had, believed power of positive thinking/mind over matter would clear things up). We are midwesterners in America. This site was/is my life vest.

[raincitygirl in reply to Ettavb]

Wow, Etta....Have other people commented on your mom's longevity given the CBD diagnosis? I've never read/heard about anyone living 14+ years with this..!

Anne G.

[Ettavb in reply to raincitygirl]

Doctors haven’t - but that’s because she refuses to see a neurologist and never went back to the one who dx’d her. Mom was an incredibly healthy person all her life - exercised daily (including swimming daily well into her 70’s ), started eating organic and made most of her food (yogurt, bread, etc.) from scratch starting way back in the 60’s (she often said her goal was to live to 100), I remember being the first one in my school to bring yogurt and whole wheat bread in my sack lunch - before Dannon was even a household name. (I remember because the other school kids made me sit at the end of the table because my food was “weird”!).

She was not on any medication when she finally entered the assisted care living facility - only vitamins.

But - I also think most people today have CBD/PSP longer than what the medical data shows - as the date of dx is used to generate the “average” time one has the condition. So I don’t think 14 is that extreme, just maybe on the longer side - I was just able to tie back to behaviors that I saw in 2004 as to the first time I saw changes (subtle as they were). My sister saw by 2006, my brother never saw until we told him of her dx in 2015. Mom didn’t think she had a problem until about 2010 (which she thought was all to be blamed on her a fib). Also because of the type of degeneration that comes with CBD in processing and logic - I think affected her ability to see what it was and then her extreme denial that she had CBD (only this year has she told others that this is what she has). So, I think ones (and others, family members, doctors, etc.) perception of a problem/symptoms related to CBD skew the timeline.

[raincitygirl in reply to Ettavb]

I agree with you: this site shows a lot of patients outside the earlier published timelines. Funny about the yogurt & whole wheat - I remember when all that was "health nut" food in the 60's - then started to become more popular in the 70s (and we are on the west coast I had a yogurt maker on the kitchen counter when I first "moved out"...

Makes me "ticked" on your mom's behalf: people who put so much effort into good health deserve so much better..

[Mickyd38]

My mum has same love i feel ur pain its a lonely one alright i feel like screamin sometimes hard to watch

[AliBee1]

Dear Bacardi1

I am so glad that you have found this site. I note that you have already had some very useful answers. I did not find it for a long time and felt very, very isolated. When you go to A and E and the Consultant has to google it, it does make you feel a rather vulnerable. It was only by chance that I found that the PSP Association and found that they also support those with CBD, which my husband was diagnosed with early 2016, after several different diagnoses. The Association have some good leaflets which are very useful to hand out to those involved in care and have advised that there will be some CBD specific ones too. Also so glad that you have found this site as it is brilliant for advice, having a rant, laughing at little things and just feeling you are supported by a huge family of people who understand where you are coming from.

Good luck and big hugs Ali B xx

[Bobbiejo21]

Hello my mum was diagnosed with CBD last year. I am her full time carer. I had never heard of it before she was diagnosed. I do everything for her as I have 3 brothers who can't be bothered. Sometimes I find it so hard especially having 2 young children.

[Kevin_1 in reply to Bobbiejo21]

Hello Bobbiejoe

Welcome to the forum.

It's a supportive place with plenty of information for the asking.

It sounds like you are managing on your own. Caring is tough, two young children as well? You must really have your hands full.

You might want to start your own thread. This forum technology is fairly primitive. Many folk won't see your post down here in another thread.

You might also want to say what country your in. There are people here from many countries and the information your given can often be tailored for your part of the world.

Welcome

Kevin

[Bobbiejo21 in reply to Kevin_1]

Thank u for the advice 😊 yeah it's really hard but I have a very supportive partner so when I get home it's nice to have someone to unload to

[raincitygirl in reply to Bobbiejo21]

Hi Bobbiejo! I encourage you to start a new post/string to introduce yourself as well. I just saw your reply by accident - and I am a CBD caregiver too, so very interested!

Welcome

Anne G.

[Bobbiejo21 in reply to raincitygirl]

Thank u x

[Kevin_1]

Sorry

I got the wrong reply box.

Message deleted.

Kevin