Great pain and expectations

November 30, 2011

Being involved in the Twitter community and following numerous others with Crohn’s and like belly troubles I have realized I am not alone when it comes to pain and the great expectations that goes along with having a chronic illness.

I have pain every day. My body hurts. My joints hurt. My belly hurts. My nether regions hurt from going to the bathroom ALL the time. Every now and then I am lucky enough to get my hands on some pain medication which, more often than not, doesn’t really do much to relieve the pain anyway. So sometimes I, like others with Crohn’s, have to go to the ER to get some heavy duty drugs to get a little relief. This isn’t usually met with kindness from the ER staff though. I know I personally have been labeled as “narcotic seeking” for an occurrence when my very own Dr. GI sent me there for pain management. Since three of the four major hospitals share electronic records in my area I am pretty screwed out of going to the ER for pain management now. I am usually immediately told there is nothing they can do for me. And if they [...] continue the story

Melissa & Case Hogan share with Patient Commando

In 2009, my then 2-year old son Case was diagnosed with a rare disease called Hunter Syndrome. It is a progressive and degenerative disease that attacks all of the body systems and usually leads to lifespan of only 12-15 years old.

Later that year, he was in the hospital for several procedures including tonsil removal and the placement of a port-a-cath for weekly infusions. It was after these surgeries that he ended up in the PICU because of airway problems. Those were incredibly sobering days. But, you can’t live with sadness 24-hours a day, even in the PICU.

After several days in the PICU, when it seemed as if Case was on the upswing, I collected my “30 Pieces of Hospital Wisdom.” It was that return to writing after the emotional time of his initial diagnosis that would later lead me to start a blog chronicling his journey, www.savingcase.com. Here is my wisdom:

Packing only one change of clothes does not actually make for a shorter hospital stay. Socks don’t really start smelling until you’ve worn them for the third day. Not the second, the third. You really can curl your hair using a compact mirror propped on top of a soap dispenser. Curling your hair while listening [...] continue the story

Family and Friends

Thank you to all those family and friends that have taken stick from me, when I am feeling a little below par. For looking out for me when I have been bolshie and insisted that I don’t need help. For caring enough to take my ranting when the frustration of living with Parky gets a little too much to cope with.

I know I am a difficult person at times and that maybe I am better living by myself and doing what takes my fancy at the time.

I may rant and rave but in my heart I know that there is a lot of kindness around me, but as I have spent so many years coping with other people’s problems I can’t seem to let others cope with mine.

My eldest daughter when quite small would never let you do things for her; her answer was ME DO IT MYSELF. So I’m afraid that is what I am trying to do, and I can honestly say I know how frustrating it is to have to stand by and watch when every part of you wants to help.

Please everyone don’t be insulted it’s not you I am having a go at it is [...] continue the story

Team Players: Type 1 Athletes To Notice

By Aryssah Stankevitsch

Being diabetic for only two years now, I’ve certainly noticed a difference in how I participate in sports. Prior to, I could be out all day playing hockey in the street, practicing my serve at my local community centre, working on soccer drills with my uncles. I was a bursting ball of energy—never ending. It was annoying to all others I’m sure, and for the most part I still am that way. However, I didn’t need to worry about what I had for breakfast, how much insulin I gave myself last night, or what my blood glucose should be before active behaviour.

Knowing some semblance of how integral controlling your sugars are while being an athlete, is entirely overwhelming. Biking with the Cycle 4 team this summer gave me that semblance, though I’m confident that professional athletes with diabetes have an even more rigorous regime. I’m still athletic, go to the gym everyday, and eat well—but these competitors have to truly be on their game; one low blood sugar can scar your career and reputation, and thus salary and fan base decline. Despite this, determination is a disease that all athletes share, especially those with something to prove on [...] continue the story

Head Strong: Zehr Family Profile

Brain Injury awareness and program funding is close to home for Zehr Insurance Brokers Limited President John Zehr. His daughter Kelly, has an acquired brain injury as a result of an illness she suffered when she was younger. The Zehr Insurance family understands how disadvantaged brain injury victims can be when it comes to competing with life’s opportunities. Kelly’s mom, Dr. Laurie Sellers, a physician who works in the emergency room, sees the challenges brain injury victims live with on every shift. A brain injury is heart breaking. It can set a family back both emotionally and financially. This brain injury cause needs increased awareness and support. Kelly is pleased to help with this campaign to create possibilities for brain injury victims to develop meaningful careers and places in society through the scholarship awards this program will fund.

Ben Fanelli Story – Head Strong

Brain injury occurs suddenly, without warning. In an instant life is changed, forever. Canadian Hockey League defenseman Ben Fanelli knows this first hand. In October of 2009 Ben suffered a head injury that changed his life. Because of this Ben has realized the need for Brain Injury Awareness and funding. And that is why he teamed up with the Kitchener Rangers to start Head Strong; Fanelli 4 Brain Injury Awareness: a program designed to raise awareness about brain injuries and provide funds to various Brain Injury associations and programs.

A wounded Parkinson’s soldier

November 28, 2011

I don’t quite know where to start. I always want to be respectful to MrP. He’s a good man. He’s a human being and I like human beings, generally. I think most are pretty damned fine people. MrP is doing brilliantly at work. Most people see him handling this Parkinson’s thing brilliantly. Hats off to him, big respect.

There is just one fly in the ointment. He is very angry. With me. Few people see this. His paranoia has come back in droves. He suspects I am having an affair, if not several of them. My emails and phone texts are all found to have meanings in them. He looks at them alot. He thinks I lie to him. My work twitter is apparently in code. (I have stopped tweeting. I love talking to people in my work community, they are great fun and just like a good natter, but it distresses him too much. MrP’s closest friend suggests I carry on, but I don’t like the arguments it can cause.) He has seen me do things twice, that I know of, that I have not done.

He is angry that I am not a doting, loving wife. Yet how [...] continue the story

Reflections on a First Patient Experience Interview

Jenny Hislop, Senior Researcher, and I have recently started a study on patient experiences of Atrial Fibrillation (AF). I must admit that, until a few weeks ago, my knowledge of AF was pretty limited (something which my interviewee says is all too widespread). A steep learning curve ensued, including finding out about symptoms, triggers, treatments and associated risks from the condition. In short, AF is a heart condition that causes an irregular and often abnormally fast heart rate. The day before yesterday, Jenny conducted our first interview on patient experiences of AF. I observed, this being the first interview using our topic guide (relevant questions to ask the participant if they do not mention these during their narrative). Yesterday it was my turn. I have conducted a few interviews before, but only ever audio recorded. Now I had to set up the camera equipment, check the lighting, sound, and the position of the participant. I had practised at home so that I felt happy setting up the tripod, adjusting the camera and remembering to attach the microphone. Yet with the participant there I was a little flustered, so keen was I to get everything right. Jenny was observing from the [...] continue the story

The DeMoe Family: Early-Onset Alzheimer’s Genetics

Using breakthrough imaging technology, researchers at the University of Pittsburgh are learning how Alzheimer’s pathology progresses in people with the rare, early-onset form of Alzheimer’s, whose genetic mutation determines that they will get the disease. The film follows the DeMoe family, five of whose six children carry the mutation, and we learn about the emotional and personal toll it takes.

The Nanney/Felts Family: Late-Onset Alzheimer’s Genetics

Looking at the Nanney-Felts family in Tennessee, this film explores the role of genetics in late-onset Alzheimer’s and the quest to find additional genetic risk factors for the disease.