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PSP Association
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CBD CorticoBasal Degeneration Support Group

Hi all

I would like to start a CBD support group which is an off shoot to the PSP support group.

I have never started a support group like this before and I am doing this because my lovely Mother has CBD. We have come a long way together and hopefully have a long way to go but would really appreciate the mutual support that we can all give each other with family members in the same situation.

This is only an emotional and/or practical support group. I am volunteering for this and there is absolutely nothing financial at all in this for me or my family. I don't actually know how I go about creating a forum? Help?

Let me know if you or a family member have CBD and would like to join us too to share ideas and ways to make life better?

If you can help me create a new support group let me know

Thank you

Martina

45 Replies
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Hi my husband has CBD i would join your group

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I would join your group. My husband has cbd.

Xx

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My husband has CBD I would join your support group.Eve.

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Yes we would love to join you Martina. My dear husband has CBD and it is breaking my heart. It would be so go to talk with others in our situation. I cannot help you with starting a forum.

All my love and best wishes

Kathie

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Until your group is formed, I would suggest you join the Yahoo support group, cbgd_support. There are many files and information you can find there. It is another very helpful, supportive group.

I recently attended a lecture given by a neurologist from a neuroscience institute. He said he did not need to talk about PSP, CBD or MSA because they were too rare. This made me infuriated, but also said we need to get the word out about these "orphan" diseases. We need to find out what others are doing and educate doctors.

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I wish there was a way to spread the word to doctors, nurses, therapists and assisted living communities across the country that these horrible diseases exist!!! We need to educate them, teach them what we have all experienced. Give feedback to a central location that becomes a source for research. I wish there was a hospital, facility or care home specifically for people with these neurological diseases. A place where people know what to expect and can assist patients and prepare families. Maybe someday.

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I'm interested.

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Hi Christine I had no idea about the Yahoo support group cbgd_support....why hasn't this been advertised on this forum I wonder? I am going to look into this right now...thank you so much.

I will get back to you all when I have looked into this...I'm not particularly savvy on the internet so if anyone else can have a look too and report back that would be great!

I do think its great that so many of you have got back to me so promptly...clearly there is a need for this support group.

I will just add that I am really short of time as I am single mother of 2 children and work full time as a teacher....

Will go and look at this Yahoo support group...

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I have been on the yahoo support group and found that most if not all of the people on there are in the USA. I have preferred the health unlocked site for PSP/CBD.

Den

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Hi Martina, I have CBD diagnosed in June this year and would definitely join your group. Hugs Lyn.

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I would like to join.. My husband Bob was diagnosed in 2011.

Xx joanne

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I would join you too ,my husband was diagnosed in June after 3years of no one knowing what was wrong.

Best wishes Ellie

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My father has Cbd, I will join

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Hi I would like to join the group. Is it still going?

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Not sure if you are on Facebook Wendyg70 but there are some CBD support groups on there also some support groups which cover CBD/PSP/MSA which are really active - also you could join Disease Maps and possibly link up with people in your area (if they have joined) x

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Thanks Tree_Hugger. I am on facebook and found a CBD page.

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I've not seen this post previously as only joined this year. My Mum has CBD so would be interested if this group is going still.

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Not sure if you are on Facebook Spiralsparkle but there are some CBD support groups on there also some support groups which cover CBD/PSP/MSA which are really active - also you could join Disease Maps and possibly link up with people in your area (if they have joined) x

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I have joined a few groups on Facebook but have found this one to be my favourite.

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Hi all, please accept my apologies in that I have not been able to get a support group up and running for us. My Mother's condition has deteriorated and I have been so busy trying to look after my Mother and my family.

As suggested above there is CBD facebook group, Disease Maps and the cbgd_support on Yahoo too. This site has been invaluable as well to me.

I'm so sorry once again, there is clearly a need for a support group as so many of us are interested.

Sending my best wishes to all,

Martina

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My mother has CBD. I would join.

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Interested in joining your support group.

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I'm one of the moderators of the Yahoo!Group. You can link to our website here and click on the JOIN button:

groups.yahoo.com/neo/groups...

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I have CBD. I was diagnosed last year. Its really a difficult thing to get support for and I worry for my son and my 15 year old daughter. It has progressed more quickly than I thought and if you have organised a support group, please please let me know.

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My name is REBECCA and I'm 47 And have cortisal basal ganglionic degeneration I'm 47 and live in SYDNEY Australia is there any one here on this sight with my condition in Sydney please

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Hi Sonia I am sorry that you have this condition as well. We are here to try and support each other, although we are based in the UK we have members from all over the world. If you have just joined us take a look at the newsfeed and feel free to search, read and post any questions you have. Although the association is named the PSPassociation it also covers CBD as they are overlapping diseases. It might be if you post the question on the newsfeed there are members in Australia who reply to your question. Welcome to our invaluable support group Sonia.

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PSP and CBD are very close relatives.... but like relatives - they are also very different. Yes I would be interested in joining.... my sister has CBD for 7 years now....

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I would love too join ur group i live in northern ireland theres only 5 people in the north and south off ireland with this my mum has it she in her 5th year its awful and no one i talk to knows anything about this id love to do a campaign off some sort to get it out there let people aware off it most think mum is great or has had a stroke when were out and about sometimes i feel like screamin how bad this disease is the shit that.comes with it but no one seems to know

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Hi, there is a PSP/CBD support group in Ireland. Meetings for carers are on the first Tuesday of the month in Dublin.

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i would definatly join. my husband is 57 and has CBD.

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My wife has CBD diagnosed March 2013 and now approaching the end of her suffering. I would love to join your group. Ken

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Hi Ken;

Did you see Martina12's update about half way down the string, that care for her mom had become so demanding she didn't proceed to set up the group? (that post was made 2 years ago.) She and Robin Riddle mentioned the yahoo support group for CBGD (the old name for CBD) - If you go up the string til you seer rriddle's post, she (Robin) has included a link to that yahoo group.

Warm regards,

Anne G. (wife of CBD patient).

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Thanks Anne, I will look it up though I am having difficulty keeping up with this site which I am fInding very helpful.

Best wishes.

Ken (Husband of CBD patient).

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Having received notification that I had been accepted for the group I have today received an email to say my application to join the group had not been accepted and I cannot join the group.

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You're kidding!! Was there any reason given?

For what it's worth, I much prefer this one too. The differences between psp & cbd aren't enough to need a separate group for cbd IMHO.....

Anne G.

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Just a mix up. I registered using two different email addresses. I am only to use my AOL address and not my iCloud address. So all is well.

Ken

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Good! I do still feel more at home here, but I scan the other for info :-)

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l have now signed up on cbgd yahoo site so far I still prefer this site.

Ken.

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Hi Ken; I saw notification of a reply from you on another string (occasional blood in urine)? ...but it disappeared!

cheers :-)

Anne G.

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I was replying to the question how do you know your partner was in pain and saying after 54 years of living together you know instinctively. When it came up as a reply to blood in urine I felt it was inappropriate so deleted it. I had intended to comment on blood in urine. My wife has been catheterised for years and blood in urine is quite common. But can be a sign of a UTI.

Best wishes 😊 Ken

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Thanks :-)

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I would join the group, my husband also has CBD

Denise x

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Hi Martina, my husband was recently diagnosed with CBGD, after several years of no real answers. I would be interested in a support group. I've not found a lot of Information on this, what seems like, very disabling disease.

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Hello Quarter and Welcome to the site :-)

Thought you should know that this thread of posts was started 3 years ago. As such, people may not see your response.

. I recommend you start a new post introducing yourself and your situation. There are lots of CBD spouses and caregivers here (I am one) and we'll be happy to answer questions, discuss symptoms etc! You're right - there is painfully little out there about this disease.

I look forward to your post :-)

Anne G.

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I would be pleased to be part of a support group and contribute whatever I can… Hionarock1

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