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Depression and Duchenne Muscular Dystrophy
I’m a 21 year old guy and have had DMD all my life and I need a wheel chair to get around and a ventilator to help me breathe. Recently I have started to feel depressed and lonely even though I am with caregivers all day (mostly my mom and dad). Also it’s not like I don’t have friends. I have a few from high school but they are all to busy to have extra time to spend with me. I really just wanted a normal life and do everything a guy my age should be doing. I would like to talk with someone who has Duchenne Muscular Dystrophy and how they cope with life but hearing from anyone with different types of MD would be good too.
Re: Depression and Duchenne Muscular DystrophyWelcome to the forum. Glad you have found us.
Thanks your questions. We do have people on the forum with DMD who can directly
answer your questions but they might not be visiting to view this thread right away.Generally though you are not alone in drawing the link between MD and depression. Several times
we have discussed this and come to the conclusion that it would be completely illogical for
people with progressive, degenerative conditions not to get totally on the downside of
that at times.Here is a thread on it from last year :-
viewtopic.php?f=28&t=8126&p=26971&hilit=depression#p26971
Fire away with any questions at all.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Depression and Duchenne Muscular DystrophyMuscular Dystrophy also offer the excellent MD Links service which puts you in direct contact with someone with the same or similar type of MD as you, you can email or call each other on a one to one basis.
If this is something you would be interested in, you can find more information HERE
Are you in contact with a Regional Care Advisor or a Social Worker? They may have details of organisations that you could spend a few hours with each week, as time out the house but have the necessary assistance you’d need so give your carers some time-out too.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Depression and Duchenne Muscular DystrophyAlso here on the forum most Fridays from 4pm we have a “hub pub” thread where we meet, chat, behave silly and just kick start the weekend in the most accessible pub online
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Depression and Duchenne Muscular Dystrophy@amgmod wrote:
Muscular Dystrophy also offer the excellent MD Links service which puts you in direct contact with someone with the same or similar type of MD as you, you can email or call each other on a one to one basis.
If this is something you would be interested in, you can find more information HERE
Are you in contact with a Regional Care Advisor or a Social Worker? They may have details of organisations that you could spend a few hours with each week, as time out the house but have the necessary assistance you’d need so give your carers some time-out too.
Can I use the MD Links service if I live in the States? Also I don’t have a Social Worker but I should talk to my parents about that. taungfox and AMGmod how do you cope with life?
Re: Depression and Duchenne Muscular DystrophyI do apologise bwillard – I did not realise you were in the USA. I hope you are somewhere well away from the dreadful weather we have been seeing reports about!
In answer to your question about MD Links, I do not know, but will email them on Monday and get a definitive answer for you.
As for coping, well sometimes I do and sometimes I don’t, I try not to dwell too much as it can easily drag me down. I’ve had episodes where I needed anti-deoressants and episodes where I was quite content with my lot. Life is like MD, unique to the individual.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Depression and Duchenne Muscular Dystrophy@bwillard5 wrote:
]Can I use the MD Links service if I live in the States? Also I don’t have a Social Worker but I should talk to my parents about that. taungfox and AMGmod how do you cope with life?
Again Sorry. Did not realise you where in USA.
Yes talk to your parents, that is a very good idea. They too will have been confused about you having a
rare progressive neuromuscular disease.How do you cope with life? We all will cope because that is what we have to do. Certainly there will be times when
it does look and feel so very difficult. Sometimes it will be worse than that. I find things to do, keep have small targets
and things to achieve, even if it is getting to a certain date with no more problems. As things get more
difficult you find you get busier doing a lesser amount of things so less time to worry about stuff. I now
glory in all the wonderful technology and gadgets that are arriving just in the nick of time for our
generation. All the touchscreen technology, speech recognition, gesture control gadgets are just
superb for people with declining muscles. I order food online, do my banking and library online
and have numerous gadgets that allow me to live independently. There are a whole range
of portable NIV (Non invasive ventilation) options and wonderful profiling and turning beds. Moving
first to a bathlift and then a seated showed solved washing problems.So, my answer, try and find things to lighten the gloom a little. Our generation is so much luckier than our
parents generation when it come to coping with MD."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Depression and Duchenne Muscular DystrophyHi bwillard5,
I have DMD and can understand feeling down and depressed, I quite often get a bit low but personally I see life as a challenge and a fight which I will win, I am 39 years old now so I must be doing something right I guess. I had a long period where I was basically bed bound, this wasn’t due to the DMD as such but a psychological issue which gave me severe panic attacks if I left my house, I wasted many years and really regret that, but talking to friends honestly and also seeing a psychologist has turned my life around, this last year I have been more active than ever and achieved a lot.
Don’t bottle things up, share how you feel, it’s not easy I know that more than most but it sounds like you have a good support network, also speaking to someone outside your group is sometimes a good thing, think about a psychologist maybe, seeing one isn’t a weakness, just talking to someone in confidence can help, then there’s this forum full of amazing people keen to help and share stories, we’ll always listen.
I also completely understand feeling alone when you are surrounded by family and friends, I often feel that way, I don’t think that’s totally a DMD thing either, it’s human instinct to want someone close who you can totally trust and share confidences with, sometimes even a best friend can’t do that and you want someone to share your life with.
I will also agree with what others have said, what choice is there but to just live however you can, life isn’t easy you just have to go with it sometimes, tough times build character I think too, that’s how I try to see things anyway.
Daniel.
Re: Depression and Duchenne Muscular Dystrophy@danielbsc wrote:
Hi bwillard5,
I have DMD and can understand feeling down and depressed, I quite often get a bit low but personally I see life as a challenge and a fight which I will win, I am 39 years old now so I must be doing something right I guess. I had a long period where I was basically bed bound, this wasn’t due to the DMD as such but a psychological issue which gave me severe panic attacks if I left my house, I wasted many years and really regret that, but talking to friends honestly and also seeing a psychologist has turned my life around, this last year I have been more active than ever and achieved a lot.
Don’t bottle things up, share how you feel, it’s not easy I know that more than most but it sounds like you have a good support network, also speaking to someone outside your group is sometimes a good thing, think about a psychologist maybe, seeing one isn’t a weakness, just talking to someone in confidence can help, then there’s this forum full of amazing people keen to help and share stories, we’ll always listen.
I also completely understand feeling alone when you are surrounded by family and friends, I often feel that way, I don’t think that’s totally a DMD thing either, it’s human instinct to want someone close who you can totally trust and share confidences with, sometimes even a best friend can’t do that and you want someone to share your life with.
I will also agree with what others have said, what choice is there but to just live however you can, life isn’t easy you just have to go with it sometimes, tough times build character I think too, that’s how I try to see things anyway.
Daniel.
Thanks Daniel. Your Advice does make me feel somewhat better. Would you mind if I private messaged you so we could talk?
Re: Depression and Duchenne Muscular DystrophyI’m really glad it helped a little, feel free to private message me anytime.
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