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11 years on.

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Bredbu

Hi all.

i was aged 58 when I was confirmed that I had PD but the signs had been present for a number of years.A depression episode at 52 and then total loss of smell and taste two years later and numerous other indicators such as my wife suggesting that my gait looked more like a monkey walking other people wondering if I had had a stroke  etc. All minor observations that of course I denied that there was any relevance till I sat down with a consultant who informed me in 2006 that I had Parkinson's..

My knowledge of this condition was like almost all medical matters virtually nil. I hard.y knew how to spell Doctor yet alone see one,but it did tie up all those little niggles that had been happening.The industry I had been in all my life was farming, and this does tend to create people whose cup is half full,in so far as next year will be better,or it will rain tomorrow,or not depending on your requirements.

My wife and I decided that we would tell our children first,and depending on their reaction how quickly we would be open about it. So in summary we were open with all our friends as we knew life would change. I am very fortunate that I am able to tolerate the meds I am on at the level I take.We moved house to a bungalow in a nearby market town some 9 Years ago and we make the most of every day. This afternoon we felt totally Christmas Crackered after a couple of busy days ( busy for us) so we had a restorative nap for 40 mins. So where are we now. Yes ,of course, as I approach 70 I am getting worse,and my ability to walking a reliable fashion has evaporated. The good news for me is that my wife has dealt with my disability in the same way she dealt with 3 children under 3 years of age. Routine,doing 3 jobs at the same time, and accepting that she now has a husband who loiters around making helpful suggestions,well he thinks they are helpful.  We try not to dwell about the future too much but take each day as it comes, and enjoy it.We have lost a number of friends these last few years that you do realise that life is finite, so it can be as simple as a cup of coffee whilst watching some felevision,a lunch with a family member or similar.

Yes,I totally accept I talk far too much,and my wife is suggesting I should write a book,about our lives together,because we have had so much fun,and have got a great family,but it is at a cost.Maybe I should not been so involved in crop husbandry and the chemicals used,maybe I should not have worked so many hours, but this is looking backwards,look ahead and wake up which will be at totally various times,I know,and tell yourself to make it count. Create a memory for somebody.

daffy

Hi Bredbu

 My husband and I (63) both worked long hours and used chemicals in Horticulture. He has emphysema -  previous smoker as well as chemical use. I was PD diagnosed last year but had been getting tell tale symptoms for a few years previously.

I like your positive posts. I too have found that my mood set makes a lot of difference to how I can cope. I'm determinedly not thinking about past chemical use. There's no point as I'd only get depressed about it and I can't change the past. But we did both enjoy our working lives, mostly,  in spite of the long hours.

Then was then, now is now and we are still together, that's the important thing.

benji

Thanks for your reply Bredhu.

Sadly my positivity has been lost after almost 20 years. OH was diagnosed aged 47 and now has additional problems connected to long term Parkinsons. 11 years ago we were also looking positively to the future, seeing the world, with life having relatively few major limitations; now there isn't much of a future at all.

I do try not to post negatively as I was once a new member and didn't want to see what the future held, suspected it, but hid the reality away. I suppose what  I am actually trying to say is, do it now while you can.I have no regrets, only that we are unable to continue as we have; we  have done so much but hoped to do even more as we are are only 65 & 66, not old!

Everyone progresses at a different rate and probably, to some degree, somewhat dependent on age of diagnosis, maybe.? Being  diagnosed at a later age, late 70's/80's there are the problems of age related mobility, and cognitive function issues, as well as P but maybe a shorter time to have to cope with them.

I well remember my father, on telling him of the diagnosis saying that he wished that it was him rather than my  OH, as he would be gone before it became bad; he was then aged 79 and I knew that he meant every word of what he said.

Bredbu

Hi Benji

Firstly,can I express my admiration of both of you having to cope with this issue for all those years. I also accept that there has to be times when the harder you try the less you can find to be positive about., and one can only find a limited number of blessings. I do really understand what a "down" day can be like when you don't even leave the house, or you just make a few metres up the road and with no cooperation between the legs and brain you shuffle home and hope that you will not ache etc as you are today the next day.

I am also aware the huge demand this PD makes not only on the patient but also on the carer. Your life has dramatically changed and now bears little resemblence to what you had planned. So how do I try to increase the up side. I try to make any sort of outing/meeting on an every other day so there is a recovery day between. Any event I find tiring and there needs to be a day off to take it a bit easier and also reflect on what you enjoyed the day before. It may have been just a 5 minute chat with a stranger or friend or somebody you did not expect to see. I also am aware of the best period of the day for me and that is the hours between 9.00am and 11.00am when my meds are at their best so any task,even simple ones can be fitted into this period.

I would not want anybody to think that my way is going to work everyday for everybody,but for me it is a help.I can recall when a member of staff walked past my door dragging a huge chain." Why are you dragging that chain?" I asked. "Have you ever tried pushing one !"came the reply.

So we all have a chain of different size,weight,length and material,and the only common factor is that it has to be dragged and the more time spent dragging it the more help we need.

I have been reading this forum for the last 7 years or so,and these are really my first few posts.

Sorry that they are too long,they will get shorter!!

 

 

 

 

DivineR

Hi Benji, 

I'd like to apologise for my post on positive attitudes. It wasn't meant to cause offence.  When I post its more of a affirmation for me. It's early days for me so easier to live in the moment. I'm sure when I get to 20 years it will be so hard for my husband and kids. 

You sound like a great support to your husband and that's all people with PD can hope for. 

benji

No apology needed DivineR and no offence taken.

As I said, it may not be harder, even after 20 years; everyone progresses at a different rate, some are still very fairly active and  mobile after many more than 20 years. This has just happened so suddenly when I thought that we could go on as before for a while longer, slower, and with some more difficulty, but still able to do what we had done for many years.

I also apologise to all those newly diagnosed, seeking support and hope for the future, and reading my post on this thread, for its negativity.I just had to vent when I posted. It has been a stressful time with our marvellous PA having to cut their hours and then finish altogether due to his wife's ill health. Finding someone to replace him has been a nightmare and is still not finalised.

I have had a person with 17 years experience and loads of certificates who had no interaction, empathy or just plain common sense, (as it materialised, on a few trial visits), but we were both willing to give him a try to see if it worked out and then he started dictating his terms and when he could be here when the job description clearly stated that it was up to us as his employers.I bent over backwards to accommodate him and then,after wasting over 2 weeks of our time with trail visits, he sent me a very nasty text saying that he wouldn't be taking up employment (hadn't actually been offered at that point), slating our present PA  -  and saying that....... the position didn't suit him!!

We had to start over again and now have a chap, on a trail basis, with no experience except caring occasionally for a family member, no folio of certificates and seems like a really nice person who has common sense, is being guided by the present PA and is taking what is needed to be done, on board.

 

DivineR

Thx Benji, 

You sound like you have alot on your plate. This site is where you Should vent as someone will understand. As a carer you probably don't get a chance to air your worries too often. I hope this last candidate works out. Some times attitude to a job outweighs experience. Good luck. 

benji

Well, another prospective PA who, in hindsight, only applied to tick the boxes at the Jobcentre!!!

They said that they would be OK with just being a little better off than signing on but the words were meaningless. Job re-advertised and no takers yet.

Direct payments are a nonsense. If you employ an agency they charge well over the odds of what the local authority pay and that includes our contribution to the cost. We don't get it free.

Pay over the rate to an agency and the local authority cut the hours that you have been allocated.Less hours means you can't pay an agency their rate anyway. Catch 22!!

Do local authorities  do this to deter people from using Direct Payments and  therefore we have to use their services? I have been advised agencies per hour rates but when you look at what they pay their carers, on job sites  it is half what they quote me per hour.Somebody is making a great deal of money out of this system.

TeeHee

Not well informed on this subject but  might be worth advertising a vacancy for a P.A on a self  employed basis.  You hire them pay them and it is their responsibility to declare earnings.  The P.A can set up as a sole trader with the tax office or research LTD company possibility.  

I was struggling to pay my mortgage etc took a job where I was paid by a monthly cheque on a self employed basis.  Just phoned tax office, set up as sole trader.

 Just get a "contract" with employee to cover it as their responsibility to get insurance and declare   earnings/tax, national insurance.  DBS checks not sure how you do this, but job centre may be able to help or refer you to another organisation.

Good Luck.  

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