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Thread: About to explode ???

  1. #1
    Forum Member pete's Avatar
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    About to explode ???

    If living with MND wasn't enough ,why on earth do folk make everything so damn difficult, Yes I am going to have a Rant, Normally a laid back sort of guy , and just making the best of a bad situation, Nothing is easy to either arrange or get done in any time scales that are even sensible.
    Like everyone else at some stage along the way we need to change things to adapt, Now for some reason Things take on an impossible feel, We have had the Social Services around looking at the ramp situation, that's as far as that went, seen no one since ??

    The powerchair was going to be ordered so I could use it externally until the ramps were built but as no one has been back in three months getting a ramp is very unlikely this year ,as is me getting in or out of the house now ,as my legs struggle with steps ,we have those both front and back doors Oh Joy .

    So thinking ahead we decided to change our Car to a WAV, that was signed for on the 24/10/2013 ,we were assured everything was in place ,sadly not ,we get at least a phone call every few days ,from a young lady with a strong Scottish accent, asking for more information and can we ring motability, can we ring DVLA, as for some reason the six or seven forms I filled in when ordering the car were not sufficient , Now I have always emailed any company explaining that I have no speech and the only way I can communicate is by texting or email, For some bloody reason that's not understandable to anyone ,neither is the need for any haste if they reply it takes four days !!!!, what the devil is wrong with folk ,I cannot speak is simple enough to understand so why ask me to phone anyone ,And what can be wrong with anything we already have a motability car, we have informed DVLA and I have a new three year licence issued after I informed them of my condition ,Undertaken a driving assessment test to show I am capable of driving ,sent copies of my results to all concerned and still that's not enough.

    Just debating now to cancel the car and stuff the lot of them ,no one tries to make anything easy ,just putting stupid obstacles in your way ,just about everything we have has been sourced by ourselves ,the stairlift , Profile Bed was paid for by us we have fitted grab handles at various points were needed having waited for weeks it was just easier to do the jobs I could myself while I can. though it took a considerable time to fit them ,,was worth it !!

    That's about it , feel much better and off to sip a very large brandy and coke ,and eat some pork pie, hope your having a less stressful day than I have had so far, and thanks for listening to a very grumpy old man who has been created by a system that seems hell bent on making almost every simple task a nightmare.
    Last edited by pete; 12th November 2013 at 21:17.
    All I need is a miracle

  2. #2
    Forum Member Terry's Avatar
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    Well I hope you feel better for that Pete;

    I to have trouble with communicating, I have written emails to people, even the police,. saying that I can't talk so please email your reply, only to have the phone ring and someone speaking to my wife about something that she has no idea of.

    We had another person from the Abby National say that I should get my wife have power of attorney on the phone after they made a mistake with my ISA's, that was two years ago.

    We asked about ramps and they could fit one in but it would need a flat area, and because of that and the slope of the land it would have to be dog legged. I got the temporary ramp and had a bracket made up for it to fix it permanently. It is about 5 feet long and works perfectly.

    I often look at the Mobility scheme and wonder if it's worth it. I have bought my own second hand one and it has been good. You can alter your own one to suite, I can now open the front window from my wheelchair in the back. Very handy when wiffy shuts me in and goes shopping.

    My advice to everyone is to try to get things sorted before you need them.

    Try to relax and get back to them, Terry

  3. #3
    Forum Member john's Avatar
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    Hi Pete,

    All drives you mad doesn't it. They act as if this is not a progressive illness and the way you are today will be unchanged going forward and we know that isn't the case. Even the people who deal with the illness on a regular basis seem oblivious to it's progressive nature.
    We bought our WAV from the Scottish people and it all seemed to go seemlessly and we got the vehicle in two or three weeks. Are you there now? Just waiting for a delivery date?
    On the ramp front have you considered portable ramps. We bought a pair and used them to get Irene into our own and other people's homes. I have a pair in the attic gathering dust. They are about a metre long folded and then have a telescopic section so unfolde and extended are about 2.5 to 3 metres long.they are pretty robust .you are welcome to them and I can parcel them up and post them to you if they will help until the builders re appear. Pm me if you are interested and I will get them on there way.

    John

  4. #4
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    Oh Pete. So rarely do you have a rant. But quite understand your frustration. Hope your pork pie washed down with the brandy has eased the situation. I have had a good day - saw the physio who is going to send me some Range of Movement exercises (they have previously been mentioned on the forum) because I am definitely getting more aches and pains and the joints are stiffening.

  5. #5
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    Glad it was not me for a change. You can feel that either you or the agencies are in cloud cuckoo land. Have you asked MND Connect to help you cut through the red tape? Hope tomorrow is a better day.

    Magic

  6. #6
    Forum Member Frank's Avatar
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    Is it 'ramp season'? Or are we all getting to the same stage?

    I came home to a letter that was hand delivered. This kindly informed us that 'there is no money' for a grant to allow us to get a ramp installed?
    No explanation of why, or if I can appeal.
    So it's another day of work, to go back down to the council, unpaid now, as I've had too much sick leave.
    I get to sit with the mothers with 'pineapple hair styles' and their screaming brats, who get money thrown at them, just to leave the building.
    That's the answer, I going to get the worst little sods in the neighbourhood to come down with me and give the lad behind the desk a storming migrane
    Sod working for a living and paying my tax and council tax, I must be grazy.
    I think the worst thing is, I only went down last week. I sat down and wrote everything down, not that they'd understand my grunts. The last thing they said was 'we will come and assess you'. Not, 'we will come and reject you'.
    'An eye for an eye', leaves the whole world blind.

  7. #7
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    For Pete, and those of you in need of a bit of cheer!

    http://www.youtube.com/watch?v=B3FzW5vQUm4

    As you can see I really do have a 'Big Bird' connection! LOL Whatever we have easier access to here in US, and it can make my Forum Friends life a bit easier, let me know, will send your way, as long as it can be shipped thru customs will send it

    CCxxx
    .

  8. #8
    Forum Member Frank's Avatar
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    Cheep Cheep. lol
    Nice one CC, got to smile at that one.
    xx Frank
    'An eye for an eye', leaves the whole world blind.

  9. #9
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    Frank, please do not fall into the spiteful thinking of the gutter press. Blame the bankers or the incompetent politicians, contact MNDa, speak to your local councillor or MP. It is an easy get out to blame the vulnerable and very negative. Before you think I am sitting in clover, I have had to spend our retirement money, that was saved over decades, to pay for my husbands ramps and adaptations. I will soon face retirement with very reduced income and no savings.

    Magic

  10. #10
    Forum Member Laila's Avatar
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    Hey Pete,

    Exploding is not a good idea. As my old karate teacher said during training after I'd had an operation 'take it easy. .... as we don't want to have to clear up the mess '. . Nice man that he was Carol

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