Genre: Forum

PCD Forum Please click on one of the subjects, categories or search for a topic. Click on a subject to view the discussions. If you have any questions about PCD and the community or would like to respond on any questions posed, please register to the forum via the sign in link at the top right of the forum page. Jan this year my Mum died of kartagener's syndrome, so PCD. I just want everyone on here to know what a wonderful and amazing women she was, and how she was told at a very young age that she had a "young person's disease" and that she would never have children.. how wrong they were !!! So Glenda brought us 3 children up on her own, she was a full time nurse and she lived her life to the very fullest. My mum Glenda was the first on the swings in the park (I used to be so embarrassed) and she always swang the highest, she took us to the highest hills and she made us all roll down them ...we would always be covered in poop by the time we reached the bottom but that was part of the fun..she was there for all our troubles and drama's throughout our teenage year's and believe me we gave her hell. Then we grew up....and she was the most amazing grandmother, I mean amazing but maybe I mean super human, LOL. Honestly she would have my children on her back running round the room, she was either a donkey or a horse or just a monster but my friends and I would watch her and be exhusted watching her but she never let up. She listened to the moans and groans and could find something positive in every single one, I'm sure this is probably a grandparent thing but I remember her being like this was all 3 of us kids...she just had that angel like patience.. I've never joined a forum before or shared my thoughts but I just can't stop the tears and the sorrow for the loss of Glenda my Mum a great Mum, a loved Nannny and overall my bestest friend. I am so sorry for your loss and I know how you feel. I don't have PCD but have a condition called Primary Immunodeficiency disease to which I suffer infections from when I was born. My mum sadly died of duodenal cancer which is rare.We had her for a year and a half but if they had known it had spread to her liver before the operation, they would not have operated on her and she would have died sooner. I feel so glad to have had that time with her and I think about her every day and visit her grave when I feel I need her. My mum has been dead for 5 years now and I still think of what a happy, beautiful mum and my best friend which will never go away. I found the 1st year very hard as I got on better with my mum than my dad and I was still living at home and now with just my dad. Things did get easier for me but I will say you still need to grieve and your tears and sorrow will eventually go away. I am not going to say it will get easier as everyone is different but I eventually did. I still talk to my mum when something has gone wrong and do feel she is looking out for me. I hope this has help as I am not very good at writing things like this. I think they have a facebook page which more people will probably use than this forum.