Hello


#1
Hi. my name is Andy and I was d/x with parkys in october 2009. I have actually been on this forum before, albeit some time ago, but never kept up with it. I'm 52 now,up until about a year ago I considered myself young for my age. Not any more I'm afraid. Athough I tend to think much like I always have [like a young man in his 20s] My body just can't keep up. At the moment I'm still working full time, although that is going to change very soon as I'm having a lot of problems copping with full time. At home I love to"try" to make music using my computer as a recording studio, I mainley use acostic guitar bass and my keyboard is rigged up to play many different vitual instruments. I never was a great guitarist but with the onset of parkys, I'm reduced to recording music virtually one note at a time.
Anyways, I look forward to conversing about anything,with anybody who might want to talk to me.
Regards....Andy.

#2
Welcome back Andy
What kind of work do you do? Are you planning to stop or go part time?

Sorry to hear that your musical technique is suffering. I'm afraid I never had any musical talent to lose.

Elegant Fowl

#3
Thanks for your reply on both topics Elegant Fowl,[may I call you Elegant]I work in the warehouse of a plumbing supplies company. A lot of the time, I'm moving heavy radiators and things about. I have the use of a fork lift but can only use it to a degree. Most things have to be shifted by hand at some point. I used to be the delivery driver but that got a bit much as I was getting very tired and had to pull over and stop before I fell asleep at the wheel. Not a good thing. My main problem is that I seem to feel so knackered all the time. Going up and down the stairs we have does not help much either. Eventually I will have to retire completely but for the time being, I think I'm going to give part time a go and see how I get on.
As for my music, I was never a Mozart in the first place but I love doing it. I get an idea and try to coax it out until there is something that is listenable. Some of it is ok, most of it is rubbish. My computer is getting full of half done,rotten ideas. I can be a painfully slow process at times. I can only listen to the same segment of music a certain amount of times,before I have to leave it alone for a few days.
Better stop now,I'm banging on a bit.
Regards...Andy.

#4
Welcome back to the forum and I am sure you will someone with an interest in making music to exchange idea's with.
I am sure you will find many interesting and helpful posts to help you on this new journey of life with PD.
My husband has had it for thirty years and had to give up work aged 46, he found many interests to keep him busy and was able to spend more time on his favourite hobby of photography entering many competitions as well as his hanging baskets and fushia plants.
What I would say about your work situation is make sure you get some information from the PD support worker before you make any decisions as they will be able to give you good advice, if you haven't one in your area go to the CAB who are excellent.
best wishes
vivian

#5
Hi Vivian, thanks for the reply. Your poor hubby. I can't really think what it must feel to have parkys for thirty years. I'll have to get used to it, unless some-body comes up with a cure. I have just recently seen an advisor from Parkinsons uk,and very helpful she was too. But it does look like I need to perfect my form filling skills. I went along to our local CAB a while back but never really got anything from the meeting.I think the chap I saw was not very aware of parkinsons,so didn't really tell me anything new.
I like using a camera myself, I havn't taken anything for a while, so I must get get it out again. I like to take photos on busy streets and try to capture unguarded moments. I recently got myself a half decent cam-corder,as soon as I get used to it,I shall attempt to make some short movies. I will have to use a tripod otherwise I would be shaking toooooo much. Any chance of viewing some of your husbands works. I would of course show you some of my stuff in return. I did make a small movie of myself talking to my daughter and her family. Looking back it was bally awful. I think for the next time I will write a script.
Regards and hope to chat with you again soon...Andy.

#6
Hi Andy,

Yes it does make you think having PD for thirty years but the years go by and it is quite a full time job with parky it is always throwing something different at you, its not boring that's for sure.
You can get camera's that are anti shake luckily my husband doesn't have a shake but he has more difficulty taking photos now than he did because his eye sight is not so good. He has used a tri-pod for some time and he also likes photo's of almost everything and not posed ones, he did win a National competition with a photo of people carrying a man in a wheelchair up steps into a building in Lourdes.He also went into all the local show's and won many first prizes until the last few years.I did think that some of the photo's would make a lovely calender and one of the ladies who worked at national was quite keen to take this forward but nothing came of it, so if there are more keen photographers out there please give some thought and see if you can raise some funds.
I would have to get our son to attach some of his photo's and send them to you and of course we would love to see yours when you can send them. I have the lovely job of going through them all from slides to the ones on disc which is going to take me ages. I would like to get the slides onto disc at sometime so it will be easier to view them, gosh down memory lane, I used to carry his light meter's and all the other gadgets around when we first met and it never stopped until he went into the nursing home two years ago. He is still taking photo's but not as many, he is very good at scrabble and the Wi games and is just as determined to win above all else, he also loves making cakes which the other residents enjoy.
Make the most of every day but don't try to do too much as that will only make the pd worse pacing yourself is not so easy but you will feel better for it.
best wishes speak again soon
vivian

#7
Hi Vivian, how are you?
Up until a couple of years ago, I was out and about most weekends with Blue,my German shepherd. We used to walk miles and miles mainly somewhere on the the South Downs. I'm Sussex born and bred and think very highly of the downs. Strangely, both Blue and I had to give up the long walks at around the same time. He has not got the best hips in the world and the vet has restricted him to a mere 20mins.walking per day. I have very much slowed down within the last couple of years and any amount of walking soon has me puffing like an old steam train.Of course I used to take the camera with me and as a result have lots of photos of the downs and surrounding area. I do so love that part of the world and it's nice that I don't have to drive far before I'm there.
What part of the country do you live in Vivian? I have never been out of GB. even for holidays and I don't have a passport. There is so much to see in this country yet. I would love to visit the Yorkshire dales and also near the top of my list is Dartmoor.I don't expect to ever see those places"in the flesh" so to speak. From now on I'm afraid I will have to look after the pennies a bit more, things might get a little tough.
I went and had a scan taken of my spinal coloum [dodgy spelling I think] yesterday the 24th. It was at Maidstone hospital where it was nice and quiet apart from the mri machine. I must confess to be a little bit claustrophobic, so being put into the machine was a little bit scary.
I think thats enough for now. Let me know how you want me to post some of my photos. Thanks for taking the time to converse with me. Although I'm married with young adults as kids, It can be a lonesome house to live in at times.
Please say hello to your other half for me, thanks, Regards....Andy.

#8
Hello Andy,

Well I am from Devon really but have lived in several counties and Australia for a couple of years not long after we got married, We went by ship and came back by ship through the Panama Canal which took seven weeks. I am so glad we did that as health problems started after a couple of years back home so holidays were limited to just a couple before we couldn't take any more, just the odd couple of days here and there. My husband and son did go on a few with the scouts and it was on one to Switzerland that the boys noticed my husbands walk was not right so he went to the doctors and PD was diagnosed, I had been nagging him for a couple of years to go to the doctor as he was complaining of a stiff back and was a bit grumpy not like him at all.
We now live near Bristol back in the west country, I have a friend who lives in Ferring Sussex and we keep in touch every couple of weeks.
I have a Labrador who goes with me everywhere she is an assistance dog and I do talks on the charity Dogs for the Disabled, they train them to do most anything you need and they use them with Autistic children the dog seem to keep them calm.

I know what you mean about being lonely even in a house full of people, take it from me it applies to carer's too and now I am really on my own at home and this year has been hard as my husband and I were such a together couple we would have been having a lovely time now just ambling around the country, which I can't even do as I use a wheelchair when out of the house,I do drive thank goodness and hoist my chair into the car so I am quite mobile like that. We had hoped to have a motor home and travel around Great Britain at our own pace, I remember when I was housebound I used to read books from the reader's digest about Britain and just imagine travelling to all the different places much better now that you can watch them on TV.
Oh well nobody can change things for you so I joined a singing group for fun and we have a concert on in a couple of weeks, it should be fun anyway, I also swim with an aqua belt otherwise I can't stay in the water more than a few minutes not a pretty site I assure you I am knocking on 67 after all but I am determined to lose more weight by the time I am 70.
I am rambling again so will stop I will sort something out about the photo's
best of luck for now
vivian