I posted this with a British stance but I think it's relevant over in the states.

Firstly this is for the older guys with DMD a very overlooked group within the health service.

Now I'm not saying lay yourselves to far open as this is a public forum but we can give some outsiders a touch of our own introspection.


I know that a lot of us are in a state of detirmined on the whole positivity, but I want us to peel away the bravado we all set up and get
straight at that guy under there.


Just few questions to that person,

Rank in order of how much you miss certain things. Write 3 things you miss, from the least missed first to the most missed last. You can
write how much it hurts to not be able to do them if you want.


Now flip that over and write 3 things you can do. From the least you can do to the best thing you can do. You can write how good it makes
you feel.


Now are there feelings inside you that you want to share that have been rattling around for years? Let it out only if you feel ready but we
need to show how things are truly affecting us before it can be changed
by the DMD community. (Don't mention others name to stop any awkward
situations.)


Lastly how do YOU think counselling should work for Adults with DMD.


Lets see what happens?

Heres my answers,

Three things missed in order,

1, Writing with a pen- it's such a pain not being able to write your own name, feels like DMD is taking away my unique individual identity.


2, Eating, Oh how I miss chips and pizza and burgers, the cruelity of seeing others eat so effortlessly. It's a kind of hurt you cannot
express in words. It's scary how my swallow might suddenly stop while
eating or drinking something. I panic and gather myself for a second
then swallow again and breathe. Gasping and thankful.


3, Breathing, I miss the carefree freedom to go anywhere and taking a big mighty breath in. You feel so alive. I miss the fact that I never
had to worry about power or tubing or battery life or comfort around the
mouth a nose. I'm so annoyed the way masks have disfigured my nose and
left a dent in my head and left an impression around my mouth. The pure
worry when you're on a vent and your breathing still feels raspy and
gaspy. What do we do then? I'm not saying this to warn the kids with
DMD, I'm crying out for real help and comfort now.


Three things I can do,

1, Grabbing my straw with my tongue. I'm amazed how gratifying it is, to get my drinking straw with my tongue if it falls slightly out of
reach. It's something I don't need to ask someone to get, the forever
asking for things wears thin. I laugh because people find it 'hilarious'
calling me lizard tongue or whatever. I laugh but cringe too, its
embarrassing independence but its a tiny bit of 'on my own, thank you
very much'.


2, Painting. I absolutely love mixing colours, choosing brushes and sketching. It is so amazing what you can do with a computer mouse, I am
so grateful to Corel who make Painter, it is awesome! The immense
satisfaction as I slowly bring a painting to 'life' from a b&w
sketch. Once a piece is finished, I'm pleased as punch but also tinged
with a bit of a 'morning after a heavy night partying' theres that deep
sense of anticlimax.


3, Writing. I love writing so much lately, as you can tell by me writing a book lol. It's like painting with words I guess. The way you
can colour a mood in a few words taking a journey to the pits of utter
unremorseful sadness and longing to the creamy heights and delights of
happiness floating on golden majestic clouds filling halcyon cobalt
skies. Conveying understanding and provoking the mind. My poems can
chisel like a sharp implement or brush finely with horsehair. It's a
talent God gave me and wow I love it!


Ok moving on to feelings that rattle in my mind, on the level here I wanna say how painful it is too hear parents of younger kids with DMD
totally frightened to see us older guys. I know gosh I know its hard for
you but blimey it's hard for me! Forget when you come and talk to me or
see me that your child may be like me in the dreaded 'future', but come
on why are you wishing 10/20 years off your childs life. There is
absolutely no guarantee your child will turn into me, we are ALL
different! No, come and talk to me Adult to Adult and see my problems as
mine and give me some empathy back. See me as a writer and an artist
and as Ian. Another thing is where I'm at on my DMD journey, do you
know, I'm tired, REAL tired, emotionally and physically, everyday is the
same struggle, no matter what drugs are taken. I've accepted DMD is my
path and that yes I'm dying and will likely die very soon. I'm sorry if
that upsets you, it doesn't mean I'm Mr give up, it means I can carry
on, without clinging to cure dreams for me. I have hope, about life
after death and that keeps me going, gives me something to worship too.
Now that means that yes I have immense sad times and depression and
'dark' periods, I am allowed too, you don't get training on how to die. I
don't need you to tell me to 'chin' up and feel better soon, when I
can't lift my chin or feel truly better. Just give me some compassion
and empathy.

Why do I help the DMD community? Because I can see the kids and teens with it and I'd rather not like to see them in this position. I
see my fellow 'older' guys who are struggling against everything to get
even a basic decent level of care. That is what I try to help, nothing
to do with forcing myself to forget my grief and mortality, we have to
be allowed to talk about it at our age group.


How would I change the counselling, first I'd make sure we (adults) had some!! Nothing here in the UK yet. Then maybe I'd get two of us in a
room with a counsellor, it'll be good to share our experiences and
compare and obviously we would need 1 on 1 sessions, just to talk or
write or cry or smile or laugh safe in the knowledge that we're not
'hurting' someone elses feelings. I'd allow us to explore writing wills
and perhaps getting other goals to work towards. Discussing what happens
at the very end, in terms of controlling anxiety, pain and what
spiritual needs we may have.


Thats me done, the floors open to you the older guys.

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Comment by Teri M. Renken on February 8, 2012 at 12:44pm

Ian,

 

I appreciate how real you are. My son deals with so many of the same feelings. Alienation by others (even family) has been the most hurtful. As he gets older and the disease takes its course it seems that people are less and less comfortable talking to him. It saddens me that good care is so hard to find. Absolutely heartbreaking.

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