Billy Bragg and Maxine Edgington’s No 11 hit song sung by Helena. In Maxine’s moving words: a mother and daughter come to terms with Mum’s life-threatening illness and recall what made them laugh together….

By Jenni August 11, 2011

Because I’m on Facebook I have the privilege of becoming “friends” with many others from across the globe who suffer from Crohn’s disease and other related stomach illnesses. Among us we share status updates and become members of groups all relating to how our illness affects our lives. It is interesting to see how so many people with the same basic issues deal with it in many different ways. It is also sad to see that most of them, if not all of them, also suffer other illness along with Crohn’s. I have noticed a trend. Now this is in now way scientifically proven by any means so don’t think there has been clinical trials and real research done here, but this is what I have seen. A great majority of Crohn’s sufferers also experience kidney issues ie: stones, infections and pain. At least two of my new women Crohn’s friends have recently been diagnosed with ovarian cancer. Nearly all of us suffer from some form of arthritis ie: rheumatoid, osteoarthritis, or general arthritis and joint pain. Depression, bipolar, anxiety and insomnia also top the list. I’m [...] continue the story

May 15, 2011

Do you ever forget where the “Too much information” line is? I spend so much time around other Crohnies, close friends and family that I forget what is acceptable in everyday conversation. The regular guy in the street doesn’t really want to know about my bowel movements.

When someone asks me a question with regards to Crohn’s, I plough straight in. Quite often describing many of the symptoms, side effects and affected areas of my body. I don’t seem to blush with embarrassment anymore. Does this mean I’m comfortable talking about bums? When I meet new people I seem to find myself talking about my ailments, whether they want to hear them or not. I was once a shy and restrained boy and now I am upfront and open.

My wife gets fed up with how much I talk to strangers but I don’t seem to be able to stop myself. Up until being diagnosed, I had never heard of the condition, so now I find myself wanting to make everyone aware.

I obviously keep some of the “juicy” details to myself as they are not for the faint hearted. I hide these details from most people as I do like [...] continue the story

January 23,2009 Kathryn lives with muscular dystrophy and has become a counselor to help others deal with personal limits

By Sheryl Jedlinski

Fear of where PD will lead us limits contact with people in advanced stages of the disease.

When diagnosed with Parkinson’s disease, I had many questions and fears but couldn’t bring myself to seek help from a support group or attend a patient education symposium. My need for answers was not nearly as great as my fear of seeing others in advanced disease stages and thinking how that could be me someday. I never imagined that I might also meet people who were doing well despite living with Parkinson’s for many years.

For a long time, I believed I was the only person with Parkinson’s who avoided those in advanced disease stages. I felt guilty about this and hoped others would not one day find me too scary to look at. These feelings are the white elephant in the room that no one acknowledges, though we all have them. Sharing our feelings and fears, and helping each other get past these is essential to weakening PD’s hold on us.

Over time, I developed a coping strategy that enabled me to attend symposiums. My husband and I would arrive late and sit in the back where all I could see were people’s [...] continue the story