Info and support dealing with CBD

[Monty21]

Hi,I am the sister of Scottie1960.She recommended I also join the site to find out info on this terrible disease. Some of your comments however hard to read have been very informing. Thanks for your comments as they will help us support our sister. Xx

[honjen43]

Welcome Monty21 . I know how you feel. It is a horrid disease and often the doctors and carers don't understand what is happening in front of them! The only answer is to keep learning, teaching and explaining to them exactly how it is! Fight for the patient's dignity and rights and correct treatment! And your needs as a carer! It is a hard road that does not have a happy ending, but it does end.

Hugs Jen xxx

[abirke]

Welcome Monty21. My name is andrea (AVB). My husband has PSP so I don't know much about your ailment. I have seen several fellow CBD ers at this site so I do hope you gain some support here. I am so sorry that you have this diagnosis. I do know that when working with your medical team, don't be afraid to speak up; speak out; speak for or against treatment. You and your sister will be your greatest advocate. Your medical team may never think about you beyond their office doors and the script they just gave you. It can be a battle especially when working with CHC or if you are in the US, with Medicare. However when you get them to know who you are , I feel you do get listened to.....but no backing off M21, If there is something you want to try talk to your doc! And remember to to talk to God...He does listen and He does care. the power of prayer supports you spiritually...

Goodluck and God speed to you ... and remember we are hear for you.

AVB

Every word of God is pure : he is a shield unto them that put their trust in Him. Proverbs 30:5

Then Jesus told His disciples a parable to show them that they should always pray and not give up. Luke 18:1

[Spiralsparkle]

Hello

This forum has been a great source or information and comfort.

It is a hard read like you say but also everyone feels like a family who have got your back.

Xx