Monomakh Hat.
Oleg Korolev.
http://en.wikipedia.org/wiki/Oleg_A._Korolevz
Well I guess as there is no news from Johanneke, my occupational therapist or Dennis Klein, from the support cushion suppliers Quattron, I will have to wait until next Friday.
Shame there is no flexibility, would have been great to have got the support cushions immediately that the ‘conflict’ between Agis and Quattron was resolved last week.
Funny despite being disappointed so often since 2006, things like this still get to me, when I was diagnosed in 2006, I thought naively that I would receive the help I needed.
Since then time and again the lack of consideration, care and often total disinterest to give help has been amazing.
What gets me is how the budgets for supplying aids to the disabled are strictly guarded, and yet so much money is spent on the peripherals, such as appointments.
Before I can get an appointment with a supplier, I have appointments with occupational therapist and then case manager and consultant.
Next week I have an appointment with Annelies, my local council advisor and Welzorg
to discuss what adjustments I need to the seat.
No problem with that, what I find strange is the appointment will, take place without Ruud from Summit, who knows precisely what adjustments are needed for me to sit well.
Hopefully the conclusion is an appointment with Ruud, which will result in adjustments which allow me to sit better in my wheelchair. .
6 comments:
Im sorry to here about your troubles getting someone to do their job properly. It can be so frustrating, i do feel for you!!!! I found your blog when searching for similar blogs to my aunties http://bettebravoblog.blogspot.com/ you should take a look, i think it is something you would be interested in. She lives in Norwich, England and suffers from Primary Progressive MS. She has had it for a good few years now but it is only as i have got older that i realised she was suffering - she always seems to have a smile on her face, which humbled me with her braveness! She is currently waiting for the treatment CCSVI in Poland - apparently it is not available in the UK yet but if tests are positive they may roll it out here. She is having the operation in August and she is uploading a lot of videos to show her condition before and after the op. She is rather technically impaired hence why I am contacting you, but she would love to hear from you and your experiences and if you would like to know more about CCSVI please please get in contact.
this is disappointing news Herrad--they simply aren't taking into consideration how difficult your situation with MS is in regard to your needing those cushions asap.....let us know if they step up the delivery earlier next week.....that is the most hopeful i can be at this point.......
Hi Kate,
Thanks for your visit and comment as well as the link to your aunts blog.
I just visited, your aunt is doing well being mobile with PPMS.
My diagnosis was June 2006 by April 2007 my legs were paralysed and now my hands and arms are getting weaker.
I can do nothing not even feed myself, except type with one finger and that this becoming weaker.
I am not interested in CCSVI, right now not until there is more research.
I read in Mitch's blog post @ Enjoying the ride that CCSVSI was not for people with PPMS.
He has had it twice so far no noticeable difference.
Good luck to your aunt,
I hope it helps her.
Hi Joyce,
Thanks for all your efforts, I will let you know soon as I get them.
Thanks for both coming by
Love
Herrad
I feel so bad for you Herrad. No one should have to go through such trouble to get what they need, but especially someone with a progressive disease. They act like they hope you will die before they have to pay for a damned wedge of foam to support you. It makes me so angry.
But as I believe that stress makes MS symptoms worse, it's best that you don't get worked up over it. So you remain your calm and patient self, okay? But don't be shy with your complaints to them. They need to hear them.
Oh, I was going to say - about CCSVI - my neuro only will prescribe something if it has shown promise in a published study, and since CCSVI's Italian Dr's results have not been replicated, he won't prescribe it. There have been some people who have bad-mouthed him on the internet because of it.
Hi Webster,
Thanks for your visits and comments.
I agree with you and will do my best to be calm and patient.
My complaints will be sent.
Also agree that CCSVI treatment is not o.k. until thoroughly tested.
Love,
Herrad
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