Parkinson's Movement
13,276 members11,865 posts

Living with Parkinson's-

I am th wife of a darling Parkinson's suffering man! He was diagnosed 6 years ago. He is now 65. He has slowed down quite a bit- but mainly due to a herniated disc in his lumbar spine which had to be operated in twice to remove it entirely. He has now a dropped foot for which he wears and orthotic! He also has a tremor in his left hand which has worsened over the last two years. He is on Azilect and has just started taking Mardopar of which we have just increased the doze as it was not helping the tremor at all. He used to be very sporty, windsurfing surfing motorcycling, trials riding and generally very active, but is no longer able to ride his motorcycles ( due to the dropped foot) and tends to get depressed every now and then! Joining this group is truly enlightening- as everyone seems to air their grievances and receive gr at advice! Thank you for the advice and suggestions - And keep Positive everyone. Best wishes

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I share his experience. I had to give up trail riding and my horses. I had back problem which caused screaming leg pain until I had epidural injection. I am in my seventh year post DX, doing well on high dose of thiamine HCl.

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you are taking allithiamine only, correct? what dosage? thanks.

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Not correct. I started, and had initial good results, 250mg Mega-benfothiamin, 50mg Allithiamine 2X day.

Upon Doc Costatini's recommend I switched to thiamin hcl, 4g a day. I select the brand, Solgar, 500mg

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Thanks! Is the 4g dosage based on body weight?

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No. Based on tolerance and effective dose. Doc. C. said you need 100 and more times the oral dose to equal an IV dose

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Hi Sradust,. I also share your husbands problems, dropped foot, herniated disc ( done twice) left hand tremor but only on low Sinemet dosage and going strong st 78, why can't he ride his motorbike, I can still drive my car.

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Hi Ramond- my husband collects classic and vintage motorcycles and finds the easiest one to ride a 1929 Arial- which has a hand gearshift! My own bike which is a modern BMWGS 650 - he is unable to ride because of the gear shift. He is unable to manipulate his left angle at all, so can't get his foot under the gear lever to shift up! A friend of ours has now suggested that we have a sort of double lever manufactured so he can kick down the lever to effectively change up( not sure if you'll understand!). Anyway we will keep at it as I really want him to continue riding as he has done many rallies and used to do very well! He does drive geared car, but manages this with knee manipulation! Take care

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Thanks for answer, I now fully understand, I was a keen

biker when was younger, I now drive auto car, much easier.

take care.

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Dear Stradust, you might try giving him Virgin Coconut Oil--at least 1 Tablespoon twice daily; then build it up gradually to at least twice that. It worked for my husband and for my Intentional Tremor.

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Has the increased dose of Madopar had a positive effect?

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Not yet as he is experiencing nausea during the day taking half a pill instead of quarter, but we will persevere!

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I had that experience too, increased by tiny tiny bits or else I got a bad reaction. Currently sticking with 1 pill x 3 day with no bad effects but not sure why as I have no positive effects from it.

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