Normally I would think that the busier you are, the more you would have to say in a blog, but I was wrong. I have had a very busy last week and weekend, and have really not felt any kind of inspiration until today. I guess that is what makes a blog different from a diary. I took the morning off from exercising so I had a little time to just regroup before a new week. Deep thoughts take time!
Last night while going through my emails etc before going to bed, I noticed one of those annoying ads claiming to be able to increase your muscle mass etc. I don't fall for stupid stuff like that, but at the same time, I am desperate for hope, as are all other people suffering from MD or other untreatable crippling diseases. We grab for hope whenever and wherever we can> I imagine being in a room full of balloons, I want one but no matter how high I jump I can never quite reach one.
Something got into me and I decided to click on the picture of the handsome muscular guy, to see what the fuss was all about. It turned out, as expected, to be an ad targeting bodybuilders telling them how nitric oxide helps improve performance, strength and whatever else bodybuilders are looking for.
There was an explanation as to how the nitric oxide works, and it seemed to me to be similar to the way the albuterol is expected to work. I decided to Google nitric oxide and MD, and I actually found quite a few links with information. I am not a doctor, so I may very well have misunderstood what the pages were saying, but as far as I could figure out, a combination of nitric oxide and an NSAID such as ibuprofen has proven some effect in treatment of MD.
The conclusion of one of the articles I found was:
"Conclusions and implications: Co-administration of NO and ibuprofen provided synergistic beneficial effects in a mouse model of muscular dystrophy, leading to an effective therapy. Our results open the possibility of immediate clinical testing of a combination of ISDN and ibuprofen in dystrophic patients, as both components are approved for use in humans, with a good safety profile."
HELLO PEOPLE, why is this not being yelled from the rooftops? is it because no one really stands to profit from it? Are people being bought by pharmaceutical companies to keep looking for more "advanced" or "sophisticated" treatments so they can all become richer while we get sicker?, or, as is probably more likely, did I completely misunderstand the information?.
Still waiting for the albuterol, but it does give me a little peace of mind to know that if it for some odd reason does not work out, I have something else I can try out. If that doesn't work out I will have to look for something else to try.
I will keep grabbing for balloons, hopefully I reach one some day, or maybe someone taller will be kind enough to grab one for me.
Stay Safe
P
Contact email keepinghopejourney@gmail.com
Hej Pernille,
ReplyDeleteNu har jeg fulgt din blog "i det skjulte" efter at være blevet opmærksom på den via FB, og jeg har beundret dine tanker og dit mod.
Ville blot lige sende dig en lille hilsen med de bedste ønsker for virkningen af medicinen.
Mange hilsner,
Kim Andreasen
Hej Pernille.
ReplyDeleteJeg bliver desvaerre noedt til at give dig ret. Grunden til at der ikke er nogen der vil skrige det ud til andre, er at der ikke er penge i det. En anden grund er at den sygdom du har ikke er ligesaa 'sexet" som Cancer. Der er mange penge i cancer og det er en sygdom ,der salger. Jeg oplevede det selv med Martin, som havde, blandt mange andre ting, CP og der var en der direkte sagde til mig at det ikke var en sexet sydom ligesom cancer. Laeg maerke til tv reklamer og indsamlinger. 9 ud af 10 er om cancer. Maaske er du blevet givet denn sygdom for at du skal vaere taleroer for de mange der ikke har dine skrive evner. Bare en tanke. Du behoever ikke at lede efter haabet, du har det allerede. Keep it up.
Mange hilsner Anette
Hej Kim,
ReplyDeleteTak for de opmuntrende ord!
P
Anette,
ReplyDeleteDet er sjovt at du skulle bruge kraeft som et eksempel. Jeg sagde en gang til en af mine laeger at jeg var doed traet af at bare fordi MD ikke er "in" ligesom brystkraeft, betyder det ikke at vi lider mindre. Vi er alle mennesker og fortjener samme respekt. Naar man faar kraeft er der altid haab om at man kan blive kureret, og det saelger, det er der altsaa ikke med CP, MS, MD etc, saa uanset hvad resultatet er, saa er det "grimt".
Jeg oensker paa ingen maade at nedgoere kraeft, det er en forfaerdelig sygdom, det er ikke patienternes skyld at der bliver smidt proportionelt flere penge ind i forskningen end der goer for de "grimme" sygdomme.
P
Hejsa Pernille:
ReplyDeleteSpaendende med den mulige "nye" behandling du lige faldt over. Maaske AK kan finde ud af noget, som du har "bestilt" hos hende... ;-)
Og husk at sygdomme som brystkraeft har faaet saa meget opmaerksomhed fordi et eller flere mennesker har kaempet for at faa os til at *se* dem (f.ex. Susan G. Komen Foundation) -- jeg tror Anette er inde paa noget her. DU er utroligt velformuleret og Jerry's Kids kan vist bruge en Adult som dig!!
Mange hilsner,
Connie