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My name is Norbert, I’m 37 years old and have DMD; Please read my story below.
My story and upbringing:
I was born in September 1985; in a small border town in Hungary. A few years later, when I was two years old, I got diagnosed with Duchenne muscular dystrophy(DMD). After receiving the bad news, my parents decided they didn't want the struggle that comes with a child with such a severe disorder. They gave me up to the foster system, and I never saw them again. I had to move from institution to institution as I grew older. I can proudly say that despite every obstacle, I finished My primary and secondary-school studies. As my illness progressed, I slowly lost the ability to use a wheelchair. Since I was 18, I've been figuratively chained to my bed, trapped between four walls. Later, soon after I turned 21, I had the opportunity to move in with the family of one of the nurses. I received "home care" for almost 16 years, up until July.
My disorder and the complication that comes with:
As I mentioned before, I was born with a progressive disorder called Duchenne muscular dystrophy(DMD). A genetic disorder characterized by progressive muscle degeneration and weakness. Every muscle in the whole body slowly wastes away, dying. Usually leading up to a death caused by the deterioration of respiratory muscles or heart. At the moment, I'm at the stage where I already can't move any part of My body except the right wrist, which has a few inches of movement, allowing me to use a computer mouse barely.
One of the symptoms or complications associated with DMD is Scoliosis, the presence of abnormal lateral curvature of the spine. Causing the organs to shift from their original, usual place. They push against each other, causing a high degree of pain. Due to My extremely curved and twisted spine, almost every activity requires a particular and complicated pose that I experimented with and developed over the last 20 years. These activities include eating, drinking, using My laptop, micturition (peeing), defecation (pooping), and many other significant movements. Often people with this disability also have Cognitive Impairment. I consider myself lucky not to have this issue on top of everything else; I fully possess My faculties.
My current circumstances and everyday struggles:
On July 26th, I had severe abdominal pain, and I had to call an ambulance and rush to the ED. In a week, I was diagnosed and treated for severe constipation, dehydration, and a few other medical issues due to insufficient care. It became evident that the type and degree of care I received were no longer enough to maintain a relatively safe state of life.
Once again, I was put in the social system, in a temporary institution for people who can't take care of themself. Either because they are recovering from a severe illness or surgery or, in the last stage, waiting to pass away. Around half of the patients also suffer from dementia or other mental issues. Currently, there are 46 patients in rooms with 5 to 8 beds for three female nurses with 12 hours shifts. The staff is exhausted, impatient, and in a constant hurry. As a result, sadly, we, the patients, are suffering. I have two serious issues which drastically impact the quality of My life:
First, they are not willing to use a Bed Urinal. Instead, I'm ordered to urinate in the adult diaper. The result of that is always the same. The urine leaks out of the diaper under Me. I have to lie in My piss covered from toe to head, sometimes for even 8 hours long. Just for clarification, I can hold my urine; I'm not suffering from incontinence. The nurses simply can't or don't want to bother using the Bed Urinal. This also comes with the pain resulting from the urine being in contact with My bedsores. On the mental side of things, I must watch and endure as My last shred of dignity is taken away from Me. Most nights, I just quietly cry myself to sleep.
Second is the amount of food provided and how I'm forced to eat and drink. The breakfast and dinner usually have no more than one slice of buttered bread with a single piece of topping and a cup of sugarless tea without any bland. Lunch for me is always a mushy diet since the nurses are unwilling to spend time sitting Me up. I have to eat lying on My side, which severely limits what I can eat. If they would take the effort and sit Me up, I could eat anything just as a healthy, non-disabled person would.
Since I can't work and never was able to, My only income is the disability pension which is 30.000 HUF/month, in the ballpark of 62 GBP/month. The cheapest non-governmental institution that hopefully could provide the care I would need costs 160.000 HUF/month and a one-time deposit of 500.000 HUF.
How do I game:
Due to my progressive illness, my laptop and the internet is my only window to the world. Since I was 18 years old, I can't leave my bed. My very limited social contacts and friends only exist on the internet. I usually watch Twitch, play and DM tabletop RPG's on Roll20 and Discord and play very few PC games that I can manage with only a mouse and virtual keyboard. I use the surfice between My chest, shoulder and collarbone of My body, as a mousepad.
My mouse in My right grip
This is the only way I still able to operate My laptop. Currently I'm using a refurbished, more than 10 years old laptop with multiple faulties. Every boot sequence takes more than 20 minutes with more than one blue screens. On top of that it restarting itself every 1-2 hours. Still better than nothing.
Why do I game:
As You can see, without my laptop I literally can't do anything but watch the roof of my room. Gaming provides me with an escape from my struggles. I get to do things otherwise unable to, meet new and interesting people from all over the world. Keeps me sane.
I hope my story proven unique enough to share with this community, even if somewhat sad tale. I have a fundraising campaign set up, with the goal to get the quality of care I need to live a better life. My GFM fundraiser link: https://gofund.me/732527e9
Wishing the best; Norbert!
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