neil sligar again, Brave Neil fights Parkinson's in the gym

crimsoncrew · 08-19-2013, 12:00 PM

Quote:

Originally Posted by Neil Sligar

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

Neil, thanks for sharing your PD journey with us. You are an inspiration... and your exercise routines give us hope and a degree of control over PD.

Is there any way you could private message the link to your diary and blog so one of us can post it here... Or can you please let us know key words to search then out online?

soccertese · 08-20-2013, 09:16 AM

NEIL,
wondering how long you have been on your current meds and when you added each one? i've avoided adding an agonist but am tempted since i am wearing off quite rapidly just taking levodopa/carbidopa. you are taking what i interpret to be a pretty low dose of mirapex.

Neil Sligar · 08-24-2013, 08:04 AM

Quote:

Originally Posted by 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.

My apologies for not replying earlier. (I too have been feeling overwhelmed lately, wondering about how and whether I'll have sufficient control to know it's time to start clearing the house of items I cherish. Nights are dreadful.)

A few thoughts. Do you have a close friend in whom you can confide? Are you satisfied with your neurologist? If not, replace him/her. (If you live in a rural area I realise that this might not be easy. Have you asked others living with PD in your part of the world their opinion of their neurologist?)

The Parkinson's community is a caring community. If you can locate my phone number in the Sydney (Australia) phone white pages don't hesitate to contact me. (Those located near you would be preferable buddies in the long term.)

I too am on Mirapex (0.75mgs/day.) I requested him to nominate an alternative at my most recent consultation. He prescribed Neupro patches. I purchased two packets, one at the lowest dose, one at a higher. These patches last 24 hours BUT, ON READING THE INFO AND INSTRUCTIONS, I WAS CONFRONTED BY THE EIGHT STEPS TO PUTTING ON A PATCH!!!!!
HOW DO I REMOVE A PATCH FROM ITS SACHET THEN PUT IT ON? I have no wife to help me.

My friend, we'll have to sort out our challenges with the help of others.

It's our Unity Walk tomorrow. It's nearing 11pm and I'm exhausted. Must have a shower, and do some tidying before checking my bag for tomorrow the BED. I should be looking forward to deep sleep. Unfortunately, that's rare.

You mentioned plunges in your physical capability when "off" medication. That seems to be happening to me also. Hadn't been significant until recently. I suspect I've bitten off too much for me to chew. All the best, Neil
P.S. Diagnosed in 1998.

David H. Blatt · 08-25-2013, 11:46 PM

Neil and I do different types of exercise but both of us have benefited from vigorous exercise. Look for our videos on YouTube.

Bob Dawson · 08-26-2013, 04:52 AM

Doc Blatt's website:

"It is time to challenge conventional expectations."

http://www.exerciseforparkinsons.com/

I was a doctor for 15 years before I became a patient with Parkinson's disease in 1997. Now I have 14 years of experience as a patient.

Bob Dawson · 08-26-2013, 06:31 AM

I can’t wait for Neil to get to 10 posts, so I hunted him down on YouTube on that new-fangled eee-lectrical internets.

Neil Sligar – Parkinsons:

http://youtu.be/kpJhImaXOQA

Edited version of the original video - used by Neil at the Parkinson's Australia conference in Brisbane.

http://youtu.be/R_-nRQmO8ko

This second video of Neil's shows him doing baseline neurological tests (tapping of fingers and foot 64 times each etc - before and after exercise). This was requested by Prof. Bas. Bloem, Medical director, Parkinson Center Nijmegen (ParC) in the Netherlands. Neil also does some impressive bike riding, rowing and weight lifting in this video. Very impressive for a man of 65 and mind boggling for a man diagnosed with Parkinson's Disease in 1998. The video was produced by Pat McGeown and Nathanile Oliveri with Nathaniels wonderful composition "Long Way Home" playing in parts. Special thanks to Danielle Summerfield and Aquafit Fitness and Leisure in Campbelltown, NSW, Australia. Filmed on June 6th, 2011.

http://youtu.be/ttMQ4npidBQ

Neil Sligar was diagnosed with Parkinson's over a decade ago. His specialist told him to expect a full time carer and wheelchair within a few years. Neil commenced a vigorous exercise routine in January 2000 (including heavy weights). He has not accepted medical advice that he should take it easy - and is still at work and an active member of the community. Neil is interviewed by Captain Pat from c91.3 at his local gym Aquafit. See also : http://www.youtube.com/watch?v=R_-nRQ...

TexasTom · 10-02-2016, 06:40 AM

Just checking in to see how Niel is doing.

Still need to get some basketballs to attempt doing a push up on:
I'm still attempting to do push-ups on four basketballs (Sept 2012)

Arsene · 10-06-2016, 03:16 PM

Quote:

Originally Posted by 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.

Bob Dawson,
The way you describe your symptoms hit a note with me. I feel like that much of the time. I am sixty five, diagnosed five years back and currently taking Sinemet Plus 25mg/100mg with half a tab of Sinemet 12.5mg/50mg and Mirapexin 0.088. All the above five times per day. That is 625mg of Sinemet Plus per day. I guess your question is how can you improve your ability to function? I can only suggest you reduce your expectations and exercise according to your mood and capabilities. I like to work out in the gym, because I feel better for it. However if I work for an hour, the next day the body goes into wobble mode for much of the day. So I limit my work load to get some exercise without sending my neurons wild. This is not the answer you are looking for, but is the best I can provide. Best wishes to you. Arsene

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