[soccertese]

http://news.ninemsn.com.au/health/20...n-s-in-the-gym

it would be nice to know what meds he is currently taking.

[made it up]

If you happen to read this Neil would love to know some more details eg do you have a tremor, have you had DBS, how much levodopa do you take every twenty four hrs, do you get much off time or dyskinesia?
I live near you and while I didnt see the 9 episode when it was aired thanks to Soccertese I just saw it online.
Thanks and enjoy the walkathon.

[Neil Sligar]

Originally Posted by made it up

If you happen to read this Neil would love to know some more details eg do you have a tremor, have you had DBS, how much levodopa do you take every twenty four hrs, do you get much off time or dyskinesia?
I live near you and while I didnt see the 9 episode when it was aired thanks to Soccertese I just saw it online.
Thanks and enjoy the walkathon.

Neil here. I hope this responds adequately.

Remain in control, never accepting that the opinion of an “expert” is true if it isn’t consistent with your experience. Experience must be real (empirical) not assumption. For example, don't assume you are not capable of something unless you have given it a go and found it to be beyond all possibility for your ability. (I accept that my days of playing the piano are over. I've tried many times. My fingers are too stiff and don't respond.)

**


My medication
Stalevo 200mg levodopa / 50 mg carbidopa /200mg entacapone 4/day
Sifrol (Mirapex in U.S.) 0.75mg pramipexole hydrochloride 1/day
Azilect 1mg rasagiline 1/day

My 10 minute address to the Parkinson's Australia conference in 2012 sums up my experience of hard physical training despite PD.
Note: I don't "exercise for Parkinson's" nor in any group of people with PD.


All the best
Neil

[Neil Sligar]

Have twice tried replying in considerable detail. My first attempt didn't convert into a visible reply; my second had links which I've been told can't be used by me because I haven't posted at least 10 messages. Was also warned about time-outs. (Of course my typing is slow; I have PD.) Have no more time. Am now at work. Appears that this is not a suitable place to reply (unless the respondent is a frequent user.) All the best,Neil

[made it up]

Hi Neil,
Thank you for your response.I too have spoken to possibly some of the same audience regarding the improvement in my QOL after DBS.
Good to hear you doing so well.
The newly diagnosed would I think especially find your story inspiring.
Regards

Originally Posted by Neil Sligar

Neil here. I hope this responds adequately.

Remain in control, never accepting that the opinion of an “expert” is true if it isn’t consistent with your experience. Experience must be real (empirical) not assumption. For example, don't assume you are not capable of something unless you have given it a go and found it to be beyond all possibility for your ability. (I accept that my days of playing the piano are over. I've tried many times. My fingers are too stiff and don't respond.)

**


My medication
Stalevo 200mg levodopa / 50 mg carbidopa /200mg entacapone 4/day
Sifrol (Mirapex in U.S.) 0.75mg pramipexole hydrochloride 1/day
Azilect 1mg rasagiline 1/day

My 10 minute address to the Parkinson's Australia conference in 2012 sums up my experience of hard physical training despite PD.
Note: I don't "exercise for Parkinson's" nor in any group of people with PD.


All the best
Neil

[Chemar]

Originally Posted by Neil Sligar

Have twice tried replying in considerable detail. My first attempt didn't convert into a visible reply; my second had links which I've been told can't be used by me because I haven't posted at least 10 messages. Was also warned about time-outs. (Of course my typing is slow; I have PD.) Have no more time. Am now at work. Appears that this is not a suitable place to reply (unless the respondent is a frequent user.) All the best,Neil

Hi Neil
I sent you a PM as well

re the links...our software is programmed to block them until a member has 10 posts as part of our anti-spam feature. Sorry but if you could see what some try to post you would understand why we need this!

Also, re the timing out...I keep this tip in my signature as well for all to see....if you check the "remember me" box when you log in, the system will not time you out. The reason it times out be default after 30 minutes of perceived "inactivity" is so that member accounts are protected in case they forgot to log out. It is a vBulletin feature. But using the "remember me" will override that.

Hope that explains it and that you decide to return and post some more.

[soccertese]

1. type into a text file and then cut/paste into your message
2. or copy it into memory before posting it.

hope you post here more often neil.

[Neil Sligar]

Originally Posted by Chemar

Hi Neil
I sent you a PM as well

re the links...our software is programmed to block them until a member has 10 posts as part of our anti-spam feature. Sorry but if you could see what some try to post you would understand why we need this!

Also, re the timing out...I keep this tip in my signature as well for all to see....if you check the "remember me" box when you log in, the system will not time you out. The reason it times out be default after 30 minutes of perceived "inactivity" is so that member accounts are protected in case they forgot to log out. It is a vBulletin feature. But using the "remember me" will override that.

Hope that explains it and that you decide to return and post some more.

Thanks, Chemar. The interview I gave to Australian Associated Press was given as ambassador of Parkinson's New South Wales, the most populous state in Australia. I'm ambassador for the Parkinson's unity walk, held at the opposite part of the year to its timing in the U.S. Until several years ago I served on the Board of Parkinson's NSW. Your reason for preventing my adequate response to members..... that I might be disseminating spam including porn.... took me by surprise but now I can see the humour in it. The links I provided included a diary of my increasing knowledge of my body's response to intense exercise while living with PD. (Back to 2005.) It also included two or three contributions to a retired social worker's blog about living with PD. The author is an ambassador for the Parkinson's Disease Foundation in the U.S.
It's a pity, but rules are rules. If they prevent members from helpful responses until respondents have placed 10 posts, then we have to live with it. Incidentally, I've responded at least twice around December 2012 and previously as well to remarks about my experience, and significant benefits of, intense exercise. Regards, Neil

[Bob Dawson]

Neil,
I first heard about you from Kate Kelsall, den mother to us all, at shake, rattle roll.
But I sort of figured, yeah, well, this Neil guy is probably very early stage, anybody can do anything in the early days of the disease... but now we see the drugs you are taking/.........., yeah, that is some serious stuff.

When I am "on" I can split hardwood firewood, swinging a 15 pound maul over my head; I cut the trees down, cut them into 18 inch lengths, split, wheelbarrow to the house, and stack; average 35 cords per year - that's a pile of wood 280 feet long and 4 feet high. That's what it takes to heat my 1840's high ceiling scarcely insulated huge country house; we heat with wood only; with 3 Jotul stoves going full blast 24/7 half the year

But when I am "off", curled up in pain and nausea and sea-sick anxiety, I do not have the strength to pull a blanket over myself.

Problem is, off times now overwhelming on times; went out this morning and could not lift the chain saw. It feels like The End. I feel really sick most of the time. Extreme fatique, freezing, tremors, a mixture of nausea and anxiety
Diagnosed in 2004
I take four 125mg levo-carbo, and 2 small hits of selegilene; I was taking Mirapex 3 times a day but stopped taking it, as doc feared for my sanity, which I sold at a pawnshop decades ago. I had no use for it. It did not match my decor.
so i am taking far fewer drugs than you, and as my condition is getting more unlivable by the day, I am getting less and less exercise. Something wrong in there. I don't seem to be in control of when I can swing an axe and when I can't cover myself because i do not have the strength to pull a blanket over myself

I am trying to ask you a question but i don't know what it is.

[Chemar]

It is automated programming Neil ...it does not distinguish the good guys from the bad ones ...only blocks any attempt at linking and, so as to be fair, we do not make exceptions... as if we did set that precedent, then the mods would have to spend a lot of their time having to go through links to determine which are ok and which are not.

10 posts can add up really quickly though so hope you keep posting