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

17 Replies

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  • Hi my husband has CBD i would join your group

  • I would join your group. My husband has cbd.

    Xx

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

  • 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

  • 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.

  • 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...

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

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

    Xx joanne

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

    Best wishes Ellie

  • My father has Cbd, I will join

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

  • 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

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

  • 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.

  • 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

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

  • 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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