feistytex

feistytex,

   Welcome to Healing Well.Hope you find us to be beneficial as both a support group,and source of info from our members.Wish you the best.Ed

Hello feisitytex and welcome. Keep the attitude and hopefully 'it' won't ever really get you. ,lke many other people on this ste try to ahve the same atitude but sometmes, just sometimes the cracks appear as I am sure you are aware - that's when the polyflla comes in handy. I do envy you your ability to maintain an otudoorsy way of life as my mobility and hand coordination are the man things I have problms with. Like Billy on ths site, I have made a choice to have some crap now in exchange for a milder medication rather than have a very good situation now - maybe - and a very poor one later in life, [am 56] but I do miss the opportunty to go for long walks and also miss golf believe it or not. "A good walk spoiled" I think George Bernard Shaw called golf but I miss it just the same. How do you get on at work? Do you get any hassle from your employers? I've met people here in the UK who have a dreadful time without any attempt at understanding the condition and piling work on people in the hope that they leave. I am lucky. Partners do try but I try to look at it in a way where they are somehow also protecting themselves from some bad thoguhts. Of course talking might help but then....................The Bear

Hi Feisty Bear rpowllng [my fingers don't keep up with my brain] again. I can certainly relate to what you are saying - although I work with older volunteers now, once upona time I also taught what you call elementary kids and even though they had probems by the bucketful, they were always aware and understood when they could idnetify with someone worse off than themselves in whatever way they perceived it. Grown ups are a different matter and it's a well known fact that big boys don't cry...........do they? St. Paul your way? I passed through one time when I caughta bus in New York and got off in Seattle. Sleepless on the way to Seattle you might say. How are you controlling you symptoms? I takegreat interest in other people's meds and how tehy get on with them and how they reactto them. There will come a day over the next year or two when I have to come off the patches and start using more mainstream meds so I like to knkow what might happen when the time comes. My tremor is more pronounced when I am speaking; difficulty in July when attending and runnng a workshop at a conference in Washington - don't wish to make an ass of myself.
How do you cope in the classroom other than the kids knowing? I read so much of people's stop go moments and the sort of exhaustion that afflicts me from time to time - at least I am allowed to work from home when I cannot manage the commute to the office. Family is a different matter - there is no 'sick' person in our household, or there hasn't been until lately. My 15 year old calls me the Crock and all he wanted to know was will pd kill me and I said no he said "Fine' and left it at that. They often see things in so much simpler dimensions than we 'learned' folks.
It's 11.58 pm and time for me to medicate and hit the sack. Keep in touch Tex and if you need to know more about transdermal patches as treatment just ask. I believe from Ed that they will maybe be available in the US later this year.
Take care Feistytex.
The Bear

Hi there Tex - writing is no problem but walking......... I walk to the rail station [used to be 7-8 minutes and now nearer 10-15 minutes depending on the day. At the other end I walk from the station to the office [12 minutes turning in to 20] but that is when I am in the office. I sometimes have to go to Newcastle and back in a day - round trip of 800 miles or so - or Wales or Scotland and then the long distance sitting brings on the stiffness whch turns into yet more pain than I am usually in. Walkng is hampered also by waiting for a total hip replacement in August so that even without the pd walking would be a bind. I try to remain upbeat promising myself that when my hip is done much of my pain will disappear and I shall be left with the stiffness which is more live-able with. I am hopng to go back to long walks and maybe buying a rowing machine. I have never ridden so I don't even magine what it msut be like for you if your coordination decides to go for a walk. I remember when we played cowboys and indians in the streets of Liverpool where I grew up I always wanted to be a palomino!!! Didin't want to ride one, wanted to BE one. Folks said I was a strange kid.
The reason I wanted to start my meds on the patch was twofold: I over-believed what I read and was told about thedownside of the standard drugs and I am chaotic when it comes to any meds regime. The patch was a risk inasmuchas t was very new - only licensed last April/May and a big IIF for anybody taking them. But I figured it was worth the risk of some strange affectations happening Pinnochio style. I would have great difficulty maintaining your meds regimes if only because there are so many of them. I would have to hang them around my neck n a box containing a mnature big ben. Boooooong 'scuse me ma'am while I swallow some pills here' Okay a bit stupid, I know, but it's how I cope. We all have our coping mechanisms and being flippant is mine. Over here n England as well as having GP's [MD's] we have Parkinson's Nurseswho are community based and cover relatively large areas. There are supposed to be 4 n the county I live in but there are none!!!!!!!!! The local funding agencies don't think pd is something worth spending money on when it comes to helping people coome to terms with the condition, give advice on medicaton etc. Liverpool e.g. has 4 and we, 180 miles away, have none. At least we don't have to pay to see the neurologist and only make a contribution towards your meds if you work otherwise they are free. I'm hoping to amke contact with a Washington based agency while I over in July. I have a few days after the conference so I will look to educating myself. Hell, it's getting late- time to play mind golf and remember the far off days when I played soccer, that's if the noise from my 15 yo boy's room allows me ay rest and that's with his cans on Where there's no sense...... Have a great week Feisty and thanks for the opportunty to ramble on - i do appreciate it.
stay well
The Bear

Hi Bear just a short note to say I'm doing fine I just had my review at work and it was great everyone is understanding and they say I'm an inspiration to the teachers and the kids. Little do they realize they are my inspiration. It sounds like your son likes loud music. My sons prefer loud motorcycles. They race them sometimes. My husband got them started on them. I would rather ride my horse. I friend of mine just found out her dad has parkinson's. I told her to log in to this website. It helps . Well time to log off. We are going to a tractor show tomorrow.
Keep moving and keep in touch.
fiestytex

Bear
We've been to a couple of tractor show already. We just came back from a trip to the north shore of lake superior. We hiked hunted for rocks and drove through an area the had had a forest fire last month. Now we are going to start baling hay. I have some kids from school coming to help.
Well time to go. I get to drive th tractor this time. It's easier than lifting the bales of hay.
fiestytex