Sunday, November 07, 2010

A Cumbersome System.

On Monday last week my occupational therapist was here to discuss various things, was a shocker to discover what usually took me a moment to get from our bedroom to the front room in the electric wheelchair took 5 minutes.

Shocked us all, was so relieved when it went ok for the rest of the week that is until yesterday when it went even worse than Monday.

The next lot of burocratic red tape is starting to happen now, as my right arm is no longer functioning well so I need an alternative steering system installed at the back of the wheelchair so Richie can steer.

Then I can get out because since Monday my steering is so bad it is almost gone, somehow
will have to be able to steer out of the apartment.

 And in and out of the narrow lift and into the mobility bus this coming Thursday for the hospital appointment, then 17 November to go to the Drive b y Truckers gig in Paradiso and 26 November for the operation.

Shall take a diazepam later and see if it relaxes my muscles and allows me to steer better, hope it does as this situation is getting to me now and I do not want it to fuck my head.

Expect to have the usual long wait of two months + before anything happens and this is after many appointments where they decide what I need.

So could be January before I have steering at back of wheelchair which I really need now, otherwise I will be stuck indoors which is not a nice prospect at all.

Really hate how long the burocracy takes here to get anything done, wish I was well off or would win the lottery so we could buy what I need and not have to wait months every time to get an appliance.

There should be a fast track system for people with progressive diseases, who need that because by the time something has been through the usual procedure it is three months later.

The procedure is usually two to three meetings, then a decision then a meeting with the supplier and then the application goes to the council who have to say ok first and that always takes two months and only then can it be ordered.

A cumbersome system which is not geared up for the recipients of help and no good for people with progressive diseases whose condition, like mine does not remain static.


Libby said...

herrad, you really should email someone in the beauracracy, aND TELL THEM! WHO BETTER TO TELL THEM THIS??

Webster said...

This must be so incredibly frustrating for you Herrad. What you suggest makes real sense. There ought to be a fast track system in place for those with progressive diseases. Who can you talk to about this? There must be someone - a local politician maybe???

In the meanwhile you will do what you can. Maybe Richie can sit in your lap as you go! Wouldn't that be a sight!!

Judloved said...

Just know that they must fight against this disease causes pain that gnaws me thinking, and as indicated Findrxonline millions of people in America who struggle daily against the pain and only seek solace in painkillers such as hydrocodone, norco, which help relieve their pain.

Herrad said...

Hi Libby,
Good idea but not sure I have the energy for it this time. sadly it is difficult to find support here for issues like this.

Hi Webster,
You are right that I shall do what I can do, wish that I knew of a politician that took up such an issue here but I do not.

Hi Judoved,
Thanks for coming by, good to meet you, glad I live in the Nethrlands and have access to marijuana which helps with the pain and spasmes.
Shame you do not have a blog, as I found out when I tried to visit you.

Thanks you three friends for coming by, good to see your comments they give me a huge boost.
Have good week.

zoomdoggies said...

It seems like anything to do with durable medical equipment is always a headache. It takes a long time, and costs a lot, even if you have good insurance. I wish I could say it's better in the US, but it's not.

I just put some pictures of my head array control up on my blog, if you'd like to see them.

Good luck getting a solution that works for you.

Herrad said...

Hi Zoomdoggies,
It is very frustrating isn't it how long everything takes especially when you need it quickly and while you can use it.
I keep getting things just when I can not use them because my MS has progressed again.
Thanks for coming by and thanks for the pics and info about your head array .