Into the Dark

By Michelle Lemme

Friends,

Thank you all for your positive thoughts and prayers during, what has been the most difficult period of my life.   I will do my utmost to provide you with an informative and accurate picture of what recently took place and where, in my journey, I am at the moment.  What I cannot do, is provide you with an accurate depiction of our lives with my 20 year old daughter (SA) for the better part of the last 7 years.

I was officially hospitalized on May 2nd, committed to the psychiatric ICU; I was admitted after having been brought to emergency, for the third time.  At that point, I was absolutely positive, in my mind, that my youngest daughter (LA) and husband were trying to kill me in an effort to cover up, that it was really LA who had done all of the really awful things that my oldest child had done herself and our family.

Believe me, I was unable to articulate any of this “crazy” thinking to my sobbing 18 year old child and loving husband.  Both of them just knew that I needed to go to the hospital.

We were still reeling when after a brief encounter with [...] continue the story

The Foul Bowel : Hospital Life

By John Bradley

There is little in life to match the feeling of vulnerability as you gingerly step out of your changing cubicle, wearing only two voluminous yet still flimsy gowns and a pair of disposable paper slippers. The initial worry as to whether or not you tied the right bits of string together pales into insignificance as you enter the public domain feeling more naked than you have ever done before.

The first thing you notice is that it is quite chilly, especially as, most likely, you are not used to cool air wafting freely in your nether regions. Then you are immediately propelled into the presence of other, equally discomforted people wearing exactly the same outfit. As with any visit to a hospital, plenty of waiting around is the order of the day. Of course, wearing next to nothing in the presence of complete strangers dampens down your desire to be sociable, so this initial waiting stage is inevitably conducted in a monastic silence and completely excludes even a glimpse of eye contact.

So, once again, any reading material whatsoever assumes a profound and deep level of interest as you pretend to be engrossed in an eight-year-old, extremely dog-eared Reader’s Digest. [...] continue the story

TEDxMaastricht – Bas Bloem – “From God to Guide”

Professor Bas Bloem ( @basbloem ) is a consultant neurologist at the Department of Neurology, Radboud University Nijmegen Medical Centre, the Netherlands. He received his M.D. degree (with honour) at Leiden University Medical Centre in 1993. In 1994, he obtained his PhD degree in Leiden, based on a thesis entitled “Postural reflexes in Parkinson’s disease”. He was trained as a neurologist between 1994 and 2000, also at Leiden University Medical Centre. In 2002, he founded and became Medical Director of the Parkinson Centre Nijmegen (ParC), which was recognised from 2005 onwards as centre of excellence for Parkinson’s disease. Together with Dr. Marten Munneke, he also developed ParkinsonNet, an innovative healthcare concept that now consists of 64 professional networks for Parkinson patients covering all of the Netherlands (www.parkinsonnet.nl).

Living with Parkinson’s Disease

I am not sure when Parky made me aware of his presence, it was as if he had been around for a long time but kept very quiet.

He started to cramp my style, stopped me in my tracks and made a general nuisance of himself. I would be minding my own business doing some mundane job and there he was a real pain in the bum.

What does he do? Well if I am trying to open a bag he holds my fingers, if I am trying to dance he thinks it’s fun to make my shoes so heavy that I look such an idiot and also feel like one. He holds my neck in a vice like grip so that I feel like a robot, probably look and sound like one as well.

Sometimes I think I have left him behind me but I can’t fool him, he just lets me know that he is happy to stay with me forever.

I suppose in some ways I have got used to having him around, I like to think I can get one over him on occasions. I decorated the hall and just nipped off to bed for a nap when he called.

So [...] continue the story

Protected: The Doctor Will See You Now

“Know your primary concern. If you have chest pain, bring it up first.” Jack C. Rosenfeld, MD, Family Medicine, Lansdale, PA Here are a few basics about your doctor’s appointment that will allow you to maximize the time with her and also keep you on track so you get the most of what your doctor has to offer. You may think you know all of this already but according to doctors and other medical professionals, many patients don’t.

Understand Your Diagnosis It is imperative that you understand your diagnosis. When you meet with your doctor, bring your medical journal and write everything down. Questions to Ask Your Doctor about Your Diagnosis:

What is my diagnosis? Where can I find information about my diagnosis? Do you have information you can give me? Are there any other possible diagnoses for my condition? What do I need to do to recover? How long do you think it will take for me to recover? What tests and procedures do I need to have done? Are there alternatives to these tests and procedures? What changes do I need to make to support my recovery? Do I need another appointment with you?

Before your appointment, write all these questions down in your medical journal. Be sure to write down the answers during or [...] continue the story

Pursuing my calling

Ever since I can remember I have been of the mindset that I have been given Mucopolysaccharidosis (MPS) II Hunter Syndrome for a higher purpose. A gift in many ways. I know it sounds strange to call a genetic progressive (and extremely rare) disease a gift. But that is how I honestly feel. The life I have been given – the experiences, opportunities, people I have met, and friendships I have made (and continue to each and every day) is amazing. I know it’s the person that ultimately creates the life they want to live, but MPS II Hunter Syndrome is part of me. I don’t think I would have had the experiences and live this amazing life if I did not have this painful disease. Of course, MPS II Hunter Syndrome provides many struggles, but to be honest I think the good has outweighed the bad. I am not saying there haven’t been tough days – trust me I have had many and will continue to do so. For those who know me though I don’t live a life where my disease defines me, but rather I believe my disease is just part of me. I truly believe this [...] continue the story

Easing the Burden: Parkinson’s Disease | Part 2

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters

Easing the Burden: Parkinson’s Disease | Part 1

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters

Testicular Cancer

A documentary about personal struggle going through Testicular Cancer.

Ballsy Cancer Society is a universal hub of resources educating men and women on the signs and treatment of testicular cancer. The society works as a national, community-based charitable organization managed primarily by volunteers whose mission and purpose in life is to eradicate testicular cancer in men and improve the lives of those living with the disease.

Costello syndrome – Por qué?

Photo Essay By Anahita Nicoukar Avalos

A sunny day of March 2003, the word COSTELLO entered my life. This was the day a geneticist said: it’s likely that your son has Costello syndrome. He didn’t say a lot more, I didn’t ask anything and before I went back home he took a few pictures of my son. With a small digital camera and the flash in he took pictures of his face, close ups of his mouth, his nose, his hands, his neck, his feet. These pictures reminded me of the pictures you see in medical reviews to describe horrible diseases. My beautiful little boy whom I was so proud of his smile and black eyes, couldn’t possibly have a terrible disease…I couldn’t help thinking, if he wanted some pictures of him why didn’t he ask me ? I could have given him better ones where everyone could see what a nice baby he was.

Once at home I searched Costello syndrome on the web, I learned that “Costello syndrome is a genetic disorder that affects many parts of the body. This condition is characterized by delayed development and mental retardation, distinctive facial features, loose folds of extra skin (especially on the hands [...] continue the story