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08-19-2013, 12:00 PM | #11 | ||
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Junior Member
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Quote:
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? |
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08-20-2013, 09:16 AM | #12 | ||
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Magnate
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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. |
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08-24-2013, 08:04 AM | #13 | ||
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Junior Member
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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. |
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"Thanks for this!" says: |
08-25-2013, 11:46 PM | #14 | ||
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Junior Member
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Neil and I do different types of exercise but both of us have benefited from vigorous exercise. Look for our videos on YouTube.
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"Thanks for this!" says: | soccertese (08-26-2013) |
08-26-2013, 04:52 AM | #15 | ||
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Senior Member
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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. |
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"Thanks for this!" says: | Rob (11-19-2013), soccertese (08-26-2013) |
08-26-2013, 06:31 AM | #16 | ||
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Senior Member
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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... |
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"Thanks for this!" says: | soccertese (08-26-2013) |
10-02-2016, 06:40 AM | #17 | ||
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Member
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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) |
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"Thanks for this!" says: | Lana (10-02-2016) |
10-06-2016, 03:16 PM | #18 | ||
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Junior Member
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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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