Friday, June 04, 2010

'' Go Where No Man Has Gone Before.''

Suddenly and without warning I felt thoroughly miserable yesterday afternoon and tears started running down my face.

Could not stop them so let it happen, l figured the tears were happening because of all the stress that I have.

This week has been full of expectations, not all of which happened; the one that really has got me upset is the lack of arm support on my wheelchair.

It has been obvious since last year that I need to have the arm support adapted to suit the adaptation of the back and seat.

In my naivety I thought that the agreement from the Amsterdam Council covered the adaptation of the whole wheelchair.

Have to keep dragging myself back from looking over into a pit of despair and hopelessness, I am always positive but sometimes things get too much for me.

I find that a howl of outrage and anger and despair usually helps me and I can go back to being positive again.

Doing just that helped me resume being me yesterday, but just for a moment I could not see any point in being here.

Glad crying relieved the pressure and afterwards I felt much better.

Just read an article in The Independent newspaper about 4 drugs which went on trial seems the report was not published for 7 years afterwards.

The drugs were supposed to delay the progress of MS but seem to have the opposite effect.
The Independent’s Jeremy Laurance, the Health Editor says

‘’The most expensive publicly funded drug trial in history is condemned today as a "fiasco" which has wasted hundreds of millions of NHS cash and raised fresh concerns about the influence of the pharmaceutical industry.

The scheme involved four drugs for multiple sclerosis launched in the 1990s which were hailed as the first treatment to delay progression of the disabling neurological condition that affects 80,000 people in the UK.’’

Jeremy Laurance goes on to say:

'The first report on the outcome was due after two years but was not published until last December, seven years later. It showed that the drugs failed to delay the onset of disability in patients – defined as walking with a stick or using a wheelchair – and may even have hastened it.’’

Not pleasant to read that drugs which are sold to delay this shitty disease makes the progress of it even quicker.

In his conclusion he says:

‘’ Multiple sclerosis is a chronic disease. It may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions which the drugs appeared to prevent, and gave quicker results.

Some experts thought the lesions were the disease but little effort was made to check. But preventing lesion formation does not prevent disability caused by the condition. The drugs deal with the lesions, not the disease.’’

Seems they have been approaching this research from the wrong end and have wasted valuable time and money trying to stop the development of lesions.

If only more research were done to find the causes and try to find a cure and not only a way to slow the progress.

The later is a pharmaceutical company’s ideal drug, one which people will need for the foreseeable future.

That‘s perfect for these ‘drug dealers’ as ever more people become hooked and can not stop for fear of their condition getting worse.

The influence of the pharmaceutical industry needs to be minimised, they need to serve us and not the other way around.

I know it will not happen in my lifetime but would it not be good if money were abolished and instead of tiny majority getting all the wealth the majority could be sustained by the earth’s natural bounty.

It is not pure fantasy, this world has more than enough resources to feed us all and provide everything we need.

If only we could dare to explore these possibilities and like they say in Star Trek

'' Go where no man has gone before''


Kris said...

Herrad, this was a great post. It made me think of my mom and the MOUNDS of pills should would take everyday in the 90's. I think about it now and wish that I was older when all of this was happening because I'd probably say enough is enough! These pills aren't helping, cut it out! I'm sure she was on all of the pills that were mentioned in this "fiasco" that has been revealed and then some. I hope you get your chair issue situated. Have a great weekend. I hope it's relaxing and fun!

Stephany said...

Hi Herrad,

I'm sorry you had that moment of anguish, you're a trooper, and it's totally understandable for you to sob about this. Good to get it out as you say. I'm also disgusted with the way pharma companies are, as you know.

Dare to dream.

I hope you and Richie are having a nice Friday evening.


mortonlake said...

it has been proven that the ammount of lesions has no effect whatsoever on how bad the MS will affect the patient. thats us herrad,in a study,one sufferer had 4 lesions,and was confined to a wheelchair,another had a scan that frankly looked like swiss cheese.more white lesions in brain than brain.and had very mild dymptoms that hardly interfered with every day living.i had 4 in brain,5 inspine.are there more now?no idea but i know im worse.we are all different herrad.bloody drug companies are bringing out new MS drugs almost daily.many,as in the article,make people worse.something wrong there love mort xx

Travelogue for the Universe said...

Stevie Ray Vaughn's song said, "Every tear that I cried only washed away the fears inside." They are essential so you do not blow your lid as we say. Like a safety valve. I pray for relief from your bureaucratic nightmare/quagmire. If a bureaucrat had to face you and see your tears and your lack of arm supports, they could not resist expediting equipment to meet your needs. That is how disabled persons must do in the US. Sit in front of congress and tell your story. Now about studies-I am on Combi-Rx study which is throught the NIH/academic excellent neurologists. It studies correlations betweens MRI/labs and functional ability. Also on a DNA study for the same. I am sorry for those who have reactions or were in bad studies. I believe socialized medicine can rush to limit expensive treatments. I am willing to trial these drugs even if I get something worse. It is for all the next people with MS too.Great pics as usual!Love Mary.

Anonymous said...

Hey Girl,
Sorry you had such a bad day but sounds like you let off some steam by crying. Sometimes it just sucks. I try to take one day at a time but sometimes several days attack me all at once. Here is a link to my old blog. If you feel inclined and go back to Oct. 06 you will see some Katrina entries and see why I can relate to your beaurocratic nightmare. Some photos of French Quarter and background on me and Robert (met him after Katrina). Hope you have a better day today. Thank you for your kind comments on my other blog.


Herrad said...

Hi Kris,
Glad you liked the post, it is amazing how many of these drugs are being swallowed with no positive results for quite a few.
Must have been difficult for you seeing your mother going through such a difficult time

Hi Stephany,
Sometimes the moments are very painful, but they pass and crying makes the tension go away.
I know and very much admire your stance against the pharma industry.

Hi Mort,
You are right about lesions not having any bearing on how it will affect us and the progression of
If only there was more effort made to properly research the causes of MS instead of making more and more money making drugs.

Hi Mary,
Thanks for reminding me of that beautiful song by Stevie Ray Vaughn, love his music.
Thanks for sharing the info about the study you are involved with, you are right about socialized medicine it would be better, perhaps need driven not profit driven.

Hi Juli,
Know exactly what you mean about several days attack you all at once.
Thanks for the link to your old blog will read it, first October 2006.
Glad we have met.

Thanks you five wonderful people fro coming by nice to see your comments