Many of my own health complications resulting from Duchenne's would be lot easier to deal with if the small things were done correctly.
For instance I need suction via a mini tracheotomy and in the beginning when it was first installed back in 2001, I had convenient bottles of sterile water. This water is used to clear the secretions left in the suction tube after my chest has been cleared. The bottles were easy to order and made such a huge difference, even though its only sterile water.
Sadly the pharmacy have changed supplier and I now get my water in little plastic cartons which have a metal seal on them. To get into it my mother has to use the sharp end of pen. This is a major pain in the behind and all the convenience has gone. I cannot get the suction tube in the cartons, so we pour the water into old empty bottles which used to contain sterile water back in 2006. It would mean alot if we could go back to the bottles and its one small thing that I would be very grateful for.
Another issue is the gloves used for suctioning. The health authority used to provide plastic single use sterile gloves until it decided they weren't appropriate in a hospital setting. Even though I use them at home. My mother was trained to suction using these gloves and they are perfect for my needs. When they were withdrawn we had to buy our own gloves to ensure I could still have suction. The health authority gave us the alternative of a pack containing two huge gloves, which would mean wasting an extra glove every time I suction. I was not willing to purposely waste things or use something we were unfamiliar with. I am happy with the single use gloves and would love it if we were provided with them on the NHS.
Theres many more small things to contend with. If only there was handbook to help advise us!
Take care duchennemen!
Tuesday, 22 September 2009
Friday, 11 September 2009
What duchennemen think of during the day, would maybe suprise some...
As duchennemen is a site dedicated to the Adult sufferer or just men who have duchenne's, I thought I'd enlighten others about what we think of during the day and thoughout our lifetimes.
Many websites and charities associated with DMD are mainly focused on a parents point of view. Very few are from the young guys or men actually living with this disease, duchennemen trying to be an exception. I acknowledge the views of parents are extremely valid as generally they take care of us most of our lives. They are highly focused on that so far elusive cure. They go through tough times seeing us lose many abilities as well as worrying about all the normal parental things. They want the best for us and that means trying many different supplements and techniques of prolonging movement (standing frames etc.). Some thinking that we aren't too concerned with the normal, trivial things other kids are going through.
Then we come to what the young men think, I'll draw on my personal knowledge from here on in, but you can see many views of other men in the Interview section of DuchenneMen here.
When I was young say around 4 to 6 years old, I basically knew I was struggling to walk and that I had weak legs. I wasn't thinking cures or bad tasting supplements, I was thinking whens the next cartoon on! I didn't dwell on things I had no idea what was going on, I'd just occasionally ask "why?"
Moving on to say 11 to 14, I knew the name of my disease, Duchenne Muscular Dystrophy, but it didn't mean alot to me. What did mean alot was adjusting to long term wheelchair use and the gradual loss of ability, but I still felt perfectly content and happy, I just wanted to be like the other 11 to 14 year olds. I loved watching football and eating all the junk of our generation and rebelling against homework. Physio annoyed me and constant appointments disrupted my school life. I was highly annoyed that hydrotherapy killed off my hopes learning French. Although DMD was impacting on me really hard I struggle to remember even thinking about a cure I didn't even know steriods could be used to help keep some strength. I wasn't told anything like that by any consultants at the time. I had read on early internet sites that DMD was incurable, and to me that just stopped me thinking about it and I just carried on living my life. The word "progressive" didn't ring alarm bells, I hadn't realised my loss of ability was actually progressive worsening.
16 was when I had a huge wake up call, my breathing wasn't monitored as it should have been and I developed bilateral bronchopneumonia. This sent me to intensive care three times in 2001 where I nearly died. Thankfully I scraped through but it left me with a mini tracheotomy and requiring a non invasive ventilator every night to prevent further hypoventilation(under breathing). I was alot more worried after this set of events, worried about catching colds and flu, I became increasingly housebound and lonely, whiling away time on my Playstation 2. Yet again I didn't wallow in self pity or into thinking the cure was coming. I just wanted the latest game, pro evolution soccer, how I miss that game, or the wonderful Gran Turismo series. I would talk incessantly to my dad about the goals I'd scored or the cars I'd driven that day. I just "threw" myself into technology and nerdiness!
20-25 my current situation is very different, I do think about the possibilities of a treatment and yes that cure, thanks to Action Duchenne. 25% of me is worried about that aspect, but 50% of me is thinking about having kids and a wife, its been hopeless so far, it seems impossible that'll I ever find a girlfriend, but that is one thing some of my peers experience to. I so want to be loved by another, that special lady who is as elusive as the "cure". I long for morning hugs and cosy evenings in front of the TV. I'd need the ultimate lady who was willing to stay in and take some care of me. Yes we'd argue but lets hope we could be a team. 15% of me wants to be able to work, but its also concerned with my current volunteering work which I can do. The last 10% is my serious hobby of artwork which fills me with immense joy and I can really forget about DMD as I mess around in Corel Painter 9. I know DMD will get worse and is more than likely to kill me, but I just want fun and a quiet life until then. A cure or even a treatment will be a mega bonus, that we do all hope for.
Its not all cure, cure, cure to us older guys it's live, live, live. To that though I add a caveat we as older guys should speak up a bit more about DMD and try not to consider a cure beyond us. Remember I and duchennemen are shouting for more recognition of us 18 plusses and trying to fly the flag for us.
Stay strong!
Then we come to what the young men think, I'll draw on my personal knowledge from here on in, but you can see many views of other men in the Interview section of DuchenneMen here.
When I was young say around 4 to 6 years old, I basically knew I was struggling to walk and that I had weak legs. I wasn't thinking cures or bad tasting supplements, I was thinking whens the next cartoon on! I didn't dwell on things I had no idea what was going on, I'd just occasionally ask "why?"
Moving on to say 11 to 14, I knew the name of my disease, Duchenne Muscular Dystrophy, but it didn't mean alot to me. What did mean alot was adjusting to long term wheelchair use and the gradual loss of ability, but I still felt perfectly content and happy, I just wanted to be like the other 11 to 14 year olds. I loved watching football and eating all the junk of our generation and rebelling against homework. Physio annoyed me and constant appointments disrupted my school life. I was highly annoyed that hydrotherapy killed off my hopes learning French. Although DMD was impacting on me really hard I struggle to remember even thinking about a cure I didn't even know steriods could be used to help keep some strength. I wasn't told anything like that by any consultants at the time. I had read on early internet sites that DMD was incurable, and to me that just stopped me thinking about it and I just carried on living my life. The word "progressive" didn't ring alarm bells, I hadn't realised my loss of ability was actually progressive worsening.
16 was when I had a huge wake up call, my breathing wasn't monitored as it should have been and I developed bilateral bronchopneumonia. This sent me to intensive care three times in 2001 where I nearly died. Thankfully I scraped through but it left me with a mini tracheotomy and requiring a non invasive ventilator every night to prevent further hypoventilation(under breathing). I was alot more worried after this set of events, worried about catching colds and flu, I became increasingly housebound and lonely, whiling away time on my Playstation 2. Yet again I didn't wallow in self pity or into thinking the cure was coming. I just wanted the latest game, pro evolution soccer, how I miss that game, or the wonderful Gran Turismo series. I would talk incessantly to my dad about the goals I'd scored or the cars I'd driven that day. I just "threw" myself into technology and nerdiness!
20-25 my current situation is very different, I do think about the possibilities of a treatment and yes that cure, thanks to Action Duchenne. 25% of me is worried about that aspect, but 50% of me is thinking about having kids and a wife, its been hopeless so far, it seems impossible that'll I ever find a girlfriend, but that is one thing some of my peers experience to. I so want to be loved by another, that special lady who is as elusive as the "cure". I long for morning hugs and cosy evenings in front of the TV. I'd need the ultimate lady who was willing to stay in and take some care of me. Yes we'd argue but lets hope we could be a team. 15% of me wants to be able to work, but its also concerned with my current volunteering work which I can do. The last 10% is my serious hobby of artwork which fills me with immense joy and I can really forget about DMD as I mess around in Corel Painter 9. I know DMD will get worse and is more than likely to kill me, but I just want fun and a quiet life until then. A cure or even a treatment will be a mega bonus, that we do all hope for.
Its not all cure, cure, cure to us older guys it's live, live, live. To that though I add a caveat we as older guys should speak up a bit more about DMD and try not to consider a cure beyond us. Remember I and duchennemen are shouting for more recognition of us 18 plusses and trying to fly the flag for us.
Stay strong!
Friday, 28 August 2009
DuchenneMen supports the findings of the Walton Report
On August 24th the Walton report into Access to neuromuscular care was released. It is a damning report that shows a 12 years age difference in Life Expectancy. Duchenne sufferers in the North East live on average into 30's and that contrasts sharply to the South West which is a shocking 18 years. Care in Wales and Northern Ireland is even worse.
Read for yourself here:- http://www.muscular-dystrophy.org/assets/0000/9943/Walton_report.pdf
Read for yourself here:- http://www.muscular-dystrophy.org/assets/0000/9943/Walton_report.pdf
Wednesday, 26 August 2009
duchennemen is now only available at .net16.net
Finally managed to access sitesled and have removed my account. You can now only find duchennemen at http://duchennemen.net16.net/index.html Please drop by for all the latest news from the adult Duchenne population. Coming up in this blog will be periodic snapshots into my DMD life. duchennemen has been updated the editorial is now corrected.
Take care guys!
Remember duchennemen is now at http://duchennemen.net16.net/index.html
Ian
Take care guys!
Remember duchennemen is now at http://duchennemen.net16.net/index.html
Ian
Saturday, 15 August 2009
Duchennemen has moved
Hi all, Sadly my previous web host has become unuseable, I cannot access my account, I've tried for weeks. duchennemen's new address is http://duchennemen.net16.net
Please drop by whenever you feel the need. Sorry for the the delay in service!
Ian
Please drop by whenever you feel the need. Sorry for the the delay in service!
Ian
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