Monday, August 17, 2009

Good Feeling.

Yesterday was a good day, crying during writing the post really did relieve alot of tension that had built up after the Friday meeting.

After thinking about it I sent a mail to express my questions and reservations about carrying on doing the adaptations in the way they did last year.

Hope that I made my point and Michelle will really look at both methods and evaluate them thoroughly.

On Friday she said she would look closely at the method used by Summit to make a mould of my body.

This shows directly how I am sitting and the seat and backrest are made using this information, the back and seat are then custom build and moulded to my body.

Would seem the logical way to go to achieve a safe and secure seat for me, so I do not run the risk of a repeat of what happened last year.

I am of course rather concerned that the w/chair is well adapted so I can sit safely, when I mentioned this on Friday Michelle promised she would evaluate Summit.

And in the next breath she said she would phone Carolien for an appointment to carry on adapting the w/chair as they were last year.

That worries me as on the one hand she says she understands that the situation is different from last year.

That my body posture has changed dramatically and I now need a lot more support and in three places, in order to sit safely.

By immediately calling Carolien to come and remodel the back rest is not to look at this situation in a holistic manner.

Is to say one thing and do another and it says to me that she does not really understand the whole situation and the absolute importance of getting this right.

This is not a situation that will be resolved if decisions are made that are influenced by career considerations, rather than the position of the client.

I am very keen to be wrong in this case and it will be one time when everything is done in my interests and not in the interests of the advisor.

Of course money plays a big role, so the solution that is cheapest is the one the Council advisors always look for first.

This is so short sighted, for example my first wheelchair was not suitable for me it was also too big and too heavy.

I got it because my advisor at the time thought it was a good wheelchair as she enjoyed riding up and down the hall at the RCA in it.

That was an appalling moment and was very instructive as it showed that the criteria were not what you needed but what they had.

It seemed as if a deal had been made with suppliers to take what seemed a job lot of one sort of wheelchair and give that wheelchair to everyone.

That is what it seemed to be like as all the people I met in my month long stay at the RCA (Rehabilitation Clinic Amsterdam) in 2006.

This was what the patients present at the time also seemed to think, no one felt optimistic that they would get the mobility aids they needed.

Well just had a phone call that the next appointment is this Thursday at 13.45 pm with Ludwine, Michelle and Carolien to discus how the wheelchair will be adapted.

We will discuss both methods of adapting the chair, the pros and cons will be discussed and it seems that I get to make up my own mind as to which method is best.

I have just had a look at the Summit website, sadly it is not in English, they have a test wheelchair with a bag attached that I get placed on, this gets slightly inflated around me and registers my shape.

It is the mould that the seat and back will be used to make a made to measure seat and backrest for me, this will provide me with the support that I need.

Very reassuringly the mould can be adjusted to accommodate changes in the body as the disease progresses.

I am very pleased my mail has had such a positive effect and feel confident now that the outcome is going to be positive.

Hope everyone has a nice day too-.


Anonymous said...

Wonderful Herrad that you made your impact! You must feel so much calmer knowing that you will be taken care of, rather than "priced" to save money...terrible. So Thursday you sit in the mold? LOL...that sounded funny, sitting in mold, you know what I mean though right?
I love the photos you posted today! I LOVE tea cups and pots! I used to have a nice little collection at one point, got lost in a move. But I do intend to start collecting again when I get settled on P.E.I. Garage sales and Goodwill stores are great for those types of finds! I'm not a big antique-er type, I find that way too expensive!
Hot, sultry day again today! I got out for a long walk yesterday and finally got some trees to make faces for me, ha ha! I'll be posting a few today at some point!
Have a great day!!!

Herrad said...

Hi Rain,
I feel alot better and look forward to Thursday.
I think I will be choosing Summit.
I won't sit in the mould this week but could happen next week.

I used to collect teacup and teapots too.

Look foward to your move, which is very exciting.
Will take a look at your blog as soon as this is posted.

Celeste Maia said...

Hello Herrad, I am glad you felt relieved after the good (bad?) cry yesterday, and that prompted you to act, and on Thursday you will be able to make up your mind about which of the two methods is the best. That is a good feeling, knowing that your mail had such a positive effect.
This is a good day, indeed.

Herrad said...

Hi Celeste Maia,
Thanks for coming by and leaving a comment.
It did feel very good when I got the call today.
Really glad I sent the mail now.
Hope you had a good day today.

Stephany said...

Great self-advocating Herrad! I have spent many many days in my life in one of those Disneyland tea cups! :) I grew up near there.

I love the painting with the women in the tea cups.

I have a tea cup collection, and tea pots too. Some were given as gifts from my mom for birthdays over the years, I like having them different and not matching, and all pretty in themselves.

I'm glad i won't be fitted for a body mold! I'll let you do that one :)!

Herrad said...

Hi Stephany,
Thanks for coming by and leaving a comment.
I am feeling confident that things will go well with getting the wheelchair well adapted.
Looking forward to the next meeting on Thursday.
I used to have teacup/coffe cup and tea and coffee pot collections.
Never liked sets of china always liked the odd pretty cup I found in a jumble sale or charity shop.
Have a good day tomorrow.

Denver Refashionista said...

I hope good things will come to pass.

Lucy said...

I do hope everything works out for you. I don't know you at all but I do know that a person who has MS and can still fight for their right to make sure they are as comfortable as can be is indeed a fighter. The very best to you Herrad.

Diane J Standiford said...

Getting a good (the RIGHT FITTED) w/c has been an ongoing issue for me; it seems much like getting dentures:one must keep going back for the "RIGHT FIT." Hang in there, it will happen and be great!

Blinders Off said...

Hi Herrad,

Stopping in to say HELLO.

I have not been blogging lately because of my pain and I had a terrible fall. I will talk about it when I get back to blogging. I am just now feeling up to visiting blogs again.

Herrad said...

Hi Nadja,
It looks like it will happen, which is great.

Hi Lucy,
Thanks Lucy for your supportive words, much appreciated as always.

Hi Diane,
I am feel confident it will happen soon.
Great thought and feeling.

Hi Debra,
Really sad to hear you had a terrible fall.
Hope you are regaining your equilibrium.
Take it very easy sweetheart.

Thanks everyone for coming by and giving me a boost by leaving a comment.
Thanks you lovely women, have a good day today.

Amrita said...

I am praying for you Herrad. Love, Amrita