https://rarediseases.info.nih.gov/diseases/8310/myotonic-dystrophy-type-1
This is for MD1 patients
I hope it may be usefull to patients and caregivers alike.
Denis Harri

I have three dogs and their unconditional love, tail wagging brings me great joy.They are for me a piece of Nature TG which brings wellness and fullfilment to my life I can’t take them walking anymore so my wife does that while I prepare their food and water.They say that people who have animals as pets can live up to 5 years longer, so thats a plus too.

After a dose of pneumonia I had to adjust my eating habits and the advice I got was eat alone, no talking ,eat small amounts and take a sip of water and swallow slowly also the use of a liquidizer was recommended for better swallowing.

Hi Dani,
I saw your article on magnesium and I would just like to saw that I use it most days 1) For constipation ,helps to settle the stomack and keep things moving so to speak 2) For muscles and nerves.
I take Epsom salts =magnesium sulfate in powder form ,a teaspoon dissolved in luke warm water works best for me.
It can also be used in… Read more

Hi Leah,
I must say the first time I heard of Duchenne MD was when Jerry Lewis started campaigning for research into MD.I was taken aback with the severity of the disease and at such a young age .Having MD1 is easyier so to speak compared to Duchenne.I always struggled with the idea that I was disabled.So I tried to forget about it and value… Read more

Last winter during lockdown ,I started baking and cooking ,it also helps being busy and moving around.I also have a mini trainer like a cycle to keep the blood and cardio in action.

Yes it can be boring ,I used to have a lot of hobbies but am not able anymore so I like to watch tv sometimes netflixs or satellite or cable ,I prefer to watch something with a good story .It a good form of escapism I guess.

I like your positive and down to earth approach  .Thanks for sharing

This is a difficult one but personally now that the vaccine is available to most people, I believe they should get it. I live with my wife and three dogs so we isolated for almost 18 months before we got our first jab. When we go out we still wear a mask. Better safe than sorry. These days many people who end up in the hospital and die are… Read more

I often have bacterial infections especially with damp or humid weather I can get conjunctivitis where the glands get blocked resulting in a sore or irritation in my eyes. But the most dangerous ones are respiratory which can lead to pneumonia if not caught in time, I think bacterial build-up in the lungs can be caused by food particles… Read more

Hi Dani,
My rehab doctor said the same thing and she even advised me not to wear it at all, but I had bought it before so I was just wondering about any other experieces Thank you and have a wonderfull weekend

Thank you for the info Leah ,have a good weekend.

Has anybody with MD1 experience with a back brace for support? Would love to hear from them

Hi Glendalee,
I’ve just read your bio and would like to wish you all the best,I too have had to ride the waves so to speak but still like being around TG
My father had MD1 as did all of his 4 brothers ,coming from Ireland they were very Catholic and lived much to themselves. They knew very little about the disease then.
It is what it is , here… Read more

Hi Dani,
I have MD1 and am begining to get a lot of the usual symptoms of the Dystrophy like trouble with swallowing ,reflux early in the morning ,
I have to use a rolator to walk with as I can’t walk straight without it,lately i’ve had a lose of apetite and my gastro is working slower ,but these are all the symptoms of loss of muscle… Read more

Yes I love watching movies especially ones with a good story or a down to earth story . They don’t always have to be new ,there’s a lot out there that I missed in the past.
I stream a lot from netflix and I watch a lot of detective series for example wallander with Kenneth Branagh .Tastes differ each unto his own.

I suppose I’m lucky in the sense that I was older when I was diagnosed with MD1, I had a good 50/60 years of normal life TG. I see it as more of an inconvenience now, but like to stay positive and just get on with it. Yes, my wife who is a wonderful person thinks I’m lazy too but that is part of the illness. Not having the muscle power… Read more