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spaxter

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spaxter last won the day on August 7 2016

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About spaxter

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    Burlington, WA

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  1. spaxter

    Duopa Pump...

    Dear Noah, so sorry to read of your troubles, it sounded so promising, hopefully this is the just the dark before dawn. It wouldn't surprise me if you bumped your knee and didn't think twice about it, so often doorways and such rear up and hit me! i have been reading your story for months now as a lurker and find myself caring very much. I am sure i am not alone in this, and many of us are wishing you well. Hang in there and keep us updated, you and Drummergirl are pioneers, so brave and strong!
  2. You have my deepest sympathy. She was a wonderful contributor to this forum, she will be missed.
  3. It's been 5 years since my diagnosis and i still get the sleep benefit. i like to think it's because i supplement with Niagen, NAC and glutathione. But it could be that the lorazepam i take after my first stretch of sleep makes me feel good for much of the morning ( i usually take it round 2:00am), go back to bed at 3:30am totally comfortable, (when i go to bed in the evening i am incredibly uncomfortable, all that tension and toe-curling as i wait for my last dose of the day of Sinemet to kick in)... i don't take my Sinemet for 2 hours in the morning, and i feel that 2 hours is my best time of day. Once i take my Sinemet i am prone to dyskinesias within 90 minutes, then more when i am wearing off...of course if i don't take it i become increasingly bradykinesic and the rigidity kicks in.. ...i am so grateful that when i get up in the wee hours that i have something i can do about the discomfort!
  4. Miracleseeker: maybe you could put the powder into applesauce, and make her puddings and custards to supplement her diet and help her gain some weight back...i agree with you, the duopa pump is invasive and would be another hassle for you to maintain. Another worry re: infection and function. Your mother is so lucky to have such a caring, loving daughter...
  5. it's interesting that dopamine requires protein for the body to manufacture its own, but protein interferes with the uptake of L-dopa. Fasting daily is supposed to be good neurologically. i did much better when i didn't eat for about 14 hours and packed all my food intake into a ten hour period. my life has been complicated by the need to take calcium every 6 hours with food. i do think that the fact i don't take exogenous dopamine in the middle of the night and eat protein instead and take a muscle relaxer/anxiolytic to sleep makes for a much better morning. i believe that one's own dopamine is superior to the Sinemet...and Miracle Seeker, does your mother enjoy her food? i take cinnamon to help ward off diabetes, it is also supposed to be good for neural protection, i would give her cake and puddings and cookies and such after one meal a day and have her supplement with cinnamon...you're so right, food is one of life's pleasures! life is for living!
  6. This thread is very helpful, i do feel so alone sometimes, and crave the company of a fellow Parkie, as no one else has a real clue, because of course we work hard at being brave and not being a bother, at being a helpmeet and good company rather than a drag. i haven't written in ages because i was tending my dying mother, then tending her estate, then i developed parathyroid adenomas and have suffered from calcium issues that complicate the PD to the nth degree. i have one parathyroid gland left and i think it may be toast, my PD has worsened exponentially since my latest surgery in February. Where i once had rigidity and paralysis in my right arm/hand, i now have tremors in my right arm, right leg, and sometimes my lower lip...i have biphasic dyskinesias, tics and grimaces and no longer wish to travel or actually see anyone that i am not especially close to...i feel best in the morning, when i have been off the Sinemet for the longest, i am wondering if that is because i take lorazepam after my first sleep (i take Sinemet at bedtime and read my kindle for around forty minutes, sleep for three hours, then cannot get comfortable no how, so i get up, take lorazepam, do a sudoku, ken ken and a crossword, eat a fried egg sandwich (because i only eat 2 meals during the day and i know that protein is important for producing endogenous dopamine), and sleep for 4 or 5 hours more. I feel pretty good when i get up, normal arm swing, etc, do about forty minutes of yoga, then work in the garden for 50 to 90 minutes, then do a short spell of free weights and calisthenics and then take my first dose of Sinemet of the day. Right now i am due for my second dose of Sinemet and i am restless and tremulous and bradykinetic and bradyphrenic...right arm/hand semi-paralyzed..very uncomfortable...i experience some relief from the Sinemet for which i am very grateful, then when the dyskinesias kick in in the evening i start imbibing a few drops of tincture of cannabis in hot water, which makes it bearable... i know the benzodiazepines are notorious for cognitive decline but so is loss of sleep! pick your poison! i'd rather have that period of relaxation and zero anxiety than suffer 24 hours a day...i am so grateful that i am retired and my DH is so supportive. Thank you for starting this thread, i have been a lurker of late, and you are all so kind and compassionate to one another, it's heartening, i just wanted to share my story with people that can understand, it does get lonely in the real world surrounded by all those hearty healthy positive thinkers..though you gotta love em!
  7. this seems exciting! ttps://thenewdaily.com.au/life/wellbeing/2018/11/08/michael-j-fox-parkinsons-therapy/?fbclid=IwAR25zL8Cj2jKkzU_lfelEnuepIHNd7_jhAQkJX5-6papeBQrq2yNMUewidM
  8. thank you, i was curious as to the process of DBS, this was enlightening.
  9. i, too, have experienced phantosmia. usually it's kind of a compost smell, but it sometimes changes. i can smell some essential oils so my sense of smell is not entirely gone, lemongrass oil kind of becomes my smell du jour when i remember to put a drop near me, i don't know if that would help someone else that smells a phantom bad odor, but it works for me.
  10. Hi McCall, I think my dyskinesias are from the C/L, they kick in about an hour after i take it, unless the restless movements, tics and grimaces i experience are not dyskinesias! In the morning, when i have not taken C/L for 10 to 12 hours, i have none of the above, in fact, i feel pretty good but for the rigidity in my right arm and hand, which is what i take the C/L for. This involuntary movement kicked in after i had been on Sinemet for about three years. Curious as to why you believe that it is just the progression of the disease itself and why you want to know if someone believes otherwise.
  11. Hi Ellen, I've been experiencing inexplicable sharp pain in my affected leg that has awakened me from deep sleep, also during the day for no good reason, it doesn't seem to be related to the tension of the muscles, in fact it seems like it's on a neural pathway of its own, i was wondering if it was typical of MS, but i felt somewhat comforted by your post, it can happen with PD! I recently started Amantadine and thought it could be related but i see that you are on Sinemet alone. i hope you get some answers as this does not seem to be subsiding.
  12. i find the trekking poles give me the confidence to set out on a long walk. so much better than a cane which skews my posture.
  13. My DH works at a teaching hospital where research on Niagen was brought up enthusiastically during one of their grand rounds. The MDs involved in the research told him that they think one to two grams is therapeutic, whereas the 250mg per day is a maintenance dose in the absence of disease. i am at the "what the heck i'll give it a try" stage with my PD, which is progressing but i am still functioning, When i first started the Niagen, i felt the positive effects immediately, but like with Ashwaganda, it gradually became unnoticeable, but i've kept it up, in case, like with Azilect, it gives me some neuroprotection. is anyone else taking Niagen? Glutathione?
  14. i have been taking Niagen (nicotinamide riboside) for at least 6 months now, along with N Acetyl-L-cysteine, started Glutathione spray sublingually a few weeks ago...all because of the mitochondrial research..recently i have been getting "peak" dyskinesia, tics and grimaces, etc. When i get up in the morning i feel pretty good, do my exercise routine for an hour before taking the Sinemet..then a couple of hours later the tics etc begin...i am wondering if maybe i should cut back on the Sinemet as this could indicate that i am manufacturing more of my own dopamine, or am i kidding myself? it's likely from being on the Sinemet for four years now....My neurologist prescribed Amantadine to mitigate the dyskinesias...my right arm and leg are still trying to curl and my dexterity is still poor., executive function makes me a whooping Olive Oyl, sometimes i actually spin 360 degrees in my indecisiveness.....acch, i don't know why i am writing this.....it's not helpful at all...i thought i would throw it out there because there is so little buzz, perhaps someone out there has been taking Niagen and has had similar responses?
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