Frank said AHHH!!

Hello all,once again thanks to every reader and for the comments and likes....

You recall my last visit to the brain center, and the shenanigans that followed the big switch over...well as you know the change of channels really did have a dismal affect, and to be honest with you by the 7th day I was seriously thinking they remove the DBS!! After all what is the point in having gone through hours of major invasive surgery (not forgetting I had to have a further operation), to be tweaked and no benefit. . No point at all I say...! Anyway there is good news..yes really!! I reverted back to my original settings and after a week i am back to how I was prior to 2nd February. Which is not what I call in good fettle, in fact most of the time I feel damn rotten.

Anyway I am not going to moan or feel hard done by, so I have a crappy disease it could be worse I could look like that picture every day!!! So what else can I tell you.. (yes OK I promise not to go on and on and on.....) Well, I had an assessment for a mobility scooter, but not a good idea for me. Then we tried a 'personal traveler' a rather posh name for a disabled power chair. Although very expensive and way way out of my budget the chair was equally as heavy and cumbersome. To dismantle and lift it would of caused my wife endless issues not to mention a potentially damaged back..A hoist I hear you shout...well in essence I agree, however, it would fill the boot space and again extremely expensive. All in all the total cost would be in the region of £5k...Gulp, gasp!! wow there I go again as I faint!! OK, not a good plan so far!!

Then we tried..now you will like this (not a lot) a wheel chair (yes you read it correct) a wheel chair, an every day push wheel chair that has the luxury of a power pack! So I try it and I felt safe, secure and really liked the product...then came the all important question..'so how much will this cost' , thinking of a 'sensible' figure. Hold tight I shall say this once and only once --approx £3k...for a wheel chair with a large Duracell and a few wires!!! Hell it did'nt even have a turbo or go faster stripes! To say I was shocked..yes I was shocked!! Oh no I feel a rant coming on..Err wake up Mr Government and suppliers of aides for disabled. Are the manufacturers and other bodies think disabled people have endless amounts of gold, maybe we all have Rockefeller in our closets..You understand me I am sure!. As always a shock like that got to me pretty mad and I began to think wider in regard to the cost of equipment that is needed in order to improve our quality of life.. I guess until you become disabled and require aides and adaptations you are oblivious how much this stuff actually is to the consumer. Sure there are grants available, but pause for a second and just think of: 1. how to apply and the complications associated and 2.where to look? believe me it is a nightmare. I am in a fortunate position in that I have great support and help from PDuk's Mary - Jane Hunter, Emily from Aged UK Cornwall and family and friends. Imagine being alone...mind blowing!! So the endless search for grants begins...(oliver Twist springs to mind). The guilt trip will soon follow with embarrassment, but you know I say this..or my wife did..Never feel guilty, bad or embarrassed about receiving aides and adaptions, or applying for financial help,. I did but not so much now, but I know I can't afford the luxury of making a better and easier life for me and my family...and how many like me's are there across the country!!!! Until next time that all folks....