11 years on


#21

Our PA is technically employed by us but the finances, insurance as an employer, are sorted out by a company engaged by our local authority to do so. All I have to do at present is e mail the hours worked by a PA every month, to this company, and it’s all taken care of.

Not thought about a self employed PA with them sorting out all the financial aspects of that set up. Worried as to how I could check that they have done all that is necessary.


#22

Bredrup here.
Well everybody ,all being well it looks like I should make 70 in less than 3 weeks. An interesting year in so many ways. Firstly the length of time I wasted to simply transfer from indefinite DLA to PIP and even when finished there was a reduction in Benefit. I do feel so fobbed of by this government and their attitude to PWP . We who have the disease know only too well how the various stages you can go through on a daily/ hourly basis and the fact that I am over 6 ft and broad shouldered means ,that as long as my meds ( 18 plus tablets a day of various drugs) have the tremor controlled and I have had a nights sleep and I did not do too much the previous day and so forth I am told that I look well.
I also added to my drugs this last year Warfarin as I had a pulmonary embolism which was dealt with one Sunday…Our local hospital NHS was brilliant and hopefully I will not be looking to deliver a repeat performance.
Much to my regret I had to give up my involvement with a company where I had been invited to sit on the Board. I did so enjoy assisting them but I had forewarned the shareholders that the longevity of my involvement would be dictated by my health status. I still have contact with them and it helps me to maintain an interest in the Agricultural industry that I was involved in all my life.
So what next, I think that the time has arrived when I give writing a book a go. I knowalready that I have advanced sales of 4 copies as long as the family don’t share and pass it on,but it will be something to explain to all my family why my working life till I was 55 involved working 24/7 and even then I was still working 3 days a week till 60 and took up a place on the Board at 65 for 4 years… So what is this about. Really the manner in which we as disabled people,who through no fault of their own are being treated. I only achieved PIP wise because I battled for over a year and ended up at a Tribunal. I am sure that there are people out there who would not have coped with the attempts by the DWP to derail my claim
So planning,battling all political parties,writing a book, learning to use my mobility scooter and not tipping it over… Avoid any other health issues, keep writing to our own MP,and also the DWP when I feel that life for PWP is not been treated with the respect required. I will,of course continue to talk,write,lobby,annoy those who need to be told, but also retain my sense of humour,and the pleasure I get from having chats to alL

Last item

final thought for today is while the day started at 1.30 a.m on the positive side I will get my monies worth from Sept 6 2018 as long as I stay awake.


#23

Thank you for your posts.
I was recently diagnosed at the age of 66.
I had intended to spend the next however many years as the silly old bloke who lives on the pretend farm doing strange things in the shed.
I know I will have to amend my plans a bit (or a lot) now but posts such as yours help keep the positive attitude.
Being the silly old bloke who does sod all is not too bad.

Jim


#24

I was diagnosed when I was 41 that was 11 years ago I agree a positive attitude does help. My personal view is you have PD it is not going away do what you can and try not to worry about the things you cant, don’t dwell on the aches and pains work through them or see your PD Nurse my nurse Tracey Ward is amazing. xxx


#25

I did make 70 about 3 weeks ago, so now I can blame everything on an appalling short term memory, that seemed to happen almost to the day.Apart from that what else has changed… Well I know that after a year to transfer me to PIP from DLA ,I am now about £1700 per year poorer, When you consider how much I put into my work, in terms of time,effort and support from my family , I feel that people with PD are treated very badly when it comes to benefits. The real heroine of this family drama is my wife,who has a different view of life in retirement than we had both planned. I still cannot believe that it takes almost 2 hours to get up and reach the breakfast table.At that point of the day decisions are made how the day is going to evolve and how to maximise the enjoyment of that period of time…
So one day at a time and not thinking too far ahead. Works for us mostly


#26

So we are not the only ones. Two hours would be quite good going here! Very difficult to make the most of the rest of the day when things can change from minute to minute. I guess it is about taking the moment when one can, but sometimes it feels like a case of , blink and you’ll miss it and another one won’t come along for a while.


#27

We have had a pleasant day today with a trip to our local town, just as we arrived we witnessed a charity shop just catch fire as we parked the car. It then caused a fair lump of excitement. Then followed a short shopping session with a really good value lunch in a pub. Arrived back home ,little nap and then cut the grass of two small lawns. It took no more than 15 mins but when I had finished I felt it had taken 15 hours of solid graft…This evening I am at this moment ,ok,but that will change as the evening goes on.
So an interesting day and our lawns are looking better and by 11.00p.m we will in bed. Tomorrow we are meeting friends for a long lunch, and we will extract every ounce of pleasure that we can. Saturday will need to be quiet as we are out again on Sunday…We are very ,very fortunate that we have a wide circle of friends, as well as family all are so appreciated for their tolerance,support and understanding and are still able to put up with us at their social events.
Last week we had a memorable 48th wedding anniversary celebration, which has given us a real reason to be so proud of our family, and thankful for our friends,which really helps to make positive days.

Thank you all for just being there.