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Wednesday, 2 May 2012

WHAT A DAY !

I said to a number of people:... You have to be intelligent and strong


... to be this ill!!!


I have written, printed and mounted the rest of the labels for the a-MAY-zing exhibition... 
Had my nails done ( a black with sparkle, is this a mistake?)
Entertained a friend..... 


BUT most of my time was spent on emails and phone calls. So just to give you a taste of how manic it can be to try to get your home and car sorted, as suitable for someone with MND, here is a run down of my day as apart from the things above.....



  • Called Allied Mobility, found I could have a Peugeot Impulse, £10,395   Blue. BUT would Innvacare Dragon chair fit in?
  • Contact OT re referral for accessible home.. Out of office , left message.
  • 10:15 Indoor wheelchair arrives. Man on his own. Wish I could have helped him down steps, sadly impossible.
  • Ring Gateway to care to ask for PA. Have been asured by psychiatrist that I can self refer for this service.  Not known. Will confer and call back.
  • Ring wheelchair people. Is the Dragon the one I will have ( this is what they have said, but need to confirm for fitting in car) Result. They need an assessment, probably next week. ( I'm in hospital then) But they will lend chair to garage to fit in car... if it is possible..
  • Still waiting to see if dragon fits in....
  • Stannah stair lift man arrives. Intermittent fault on switch?  He thinks not , but my hands!  (I get stuck halfway up the stairs!!). Sod my hands!!!
  • Speak to Motability. refused grant again. But helped to find other car providers. .. Actually was transferred 4 times on this call. Ended up that Thersa will ring back. She did and thats when I got info on car possibility.
  • Contact Ebay.. bags to print for exhibition not yet arrived... email only method of contact ( are they hiding).
  • Ring GM Coachwork recar.... Dave will call back.
  • Send txt to two missed out friends re exhibition...
  • Ring Sirus automotive. Possible Fiat that I could drive from whell chaior. £8.995 but £1.495 to put locking for chair in... though later on they felt they could do a deal on this. Car/van is black.
  • Richard rings re wattage of fire for bungalow. 
  • Gm Coachwork ring back, it's not Dave it's Mark. They have two suitable cars £13k and £16 K. I said thankyou, but no way.
  • OT rings back to confirm she has hand delivered  the referral.
  • Email sent to Accessible homes to ask if equity release possible and if so at what percentage.
  • Gateway to care ring back and offer me, not a PA, but some boxes to pack up belongings in!! 
  • Gateway rang to say they didn't provide a PA but  I should contact SCOPE.
  • Dentists rang , could I call in to do paperwork or should they send it. SEND IT PLEASE!!!
  • Get email from Calderdale to say that my email( asking for details re necessary adaptations, and giving a time for this to be received by me,)..... is being logged as a complaint. I have been moved on to another manager.
  • I respond that I wasn't making a complaint merely seeking a resolution quickly and an acknowledgement that time is of the essence. ( Bearing in mind the first referral was made on Feb 17th!!)



So , as you can see I am not idle. But neither do I have any confirmed results on house or car.... 
OK. Tomorrow is another day... and , believe it or not, today was typical. 
and.....All I want to do is to enjoy the time I have.......

HUG ME, I'VE GOT MND.

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