Forum Replies Created
June 4, 2021 at 9:09 am #20861
Beth and others who need funding assistance for Rytary (like myself),
There are patient financial assistance programs out there that are funded by donations. Take a look at this resource from the Davis Phinney foundation https://davisphinneyfoundation.org/reduce-cost-parkinsons-medications/ Scroll down to “Patient Assistance for Specific Drugs” Then click on Rytary and follow the application instructions. You may qualify for this medicine at no cost.
March 23, 2021 at 8:53 pm #20440
Likewise, for many years before my diagnosis I would occasionally have strong bodily jerks involving legs or arms when drifting off to sleep–like a final surge of electrical release that my body needed in order to settle down or something. Then I could regroup and get to sleep without further incidence. These episodes would happen only every few months.
But, after diagnosis (5 years now, but almost 9 years since initial tremor symptoms began) these pre-slumber jerks have stopped. Also, acting out while dreaming has been eliminated by increasing melatonin dosage from 5 mg to 10mg, under the supervision of my neurologist.
October 29, 2020 at 6:04 pm #19652
Good topic that has resonated with several forum participants, including me. Thanks to all for chiming in.
I have had a few bouts of acting-out while dreaming as well after being diagnosed with PD, including one vivid dream involving vigorous leg kicking to ward off a pack of dogs that were trying to attack me. At the beginning of 2020 I relayed this episode to my neurologist who suggested increasing melatonin dosage to 10 mg at bedtime. I take a time-release formula and it has completely turned this problem around–no more acting out while sleeping and vivid dreams have decreased substantially.
If RBD is a concern I’d urge discussing it at your next neurologist appointment. I also take 75 mg of Trazodone which helps induce sleep (and has virtually no side-effects the next morning). That is until my overactive bladder lets me know it’s time to get up, which unfortunately can be several times a night despite limiting fluid intake in the evenings. I’ll be seeing a neurologic urologist next month at UC San Diego for a more comprehensive approach to this problem, as I had first been prescribed Mirabegron and then Trospium for OAB symptoms for 1-1/2 years with virtually no improvement (and Mirabegron was very pricey even with obtaining it at lower cost Canadia pharmacies). I’m hoping that an effective treatment will be in store that decreases frequency issues and thereby restores better rest, as trying to function with broken sleep is becoming a big problem.
But, I can definitely vouch for larger doses of melatonin. At least, it works for me.
August 31, 2020 at 1:50 pm #19262
Will the Instagram Live content be available for viewing after the live event?
August 28, 2020 at 4:36 pm #19240
With mounting evidence of the exposure to harmful chemicals that are ubiquitous in our environment and the risk of developing neurological disorders later in life, there is little doubt to me that a strong connection exists. Please see my post of Monday “New Forum topic—Toxins’ Insidious Effects on the Brain” https://parkinsonsnewstoday.com/forums/forums/topic/new-forum-topic-toxins-insidious-effects-on-the-brain-8-24-20/
In it, there’s an action opportunity from the Michael J. Fox foundation urging Congress to ban many of these toxins–mainly paraquat.
Joel, I like your more fitting title of the EPA (I refer to it as the Environmental Pollution Agency). It’s no coincidence that a proposed EPA ban on paraquat was postponed indefinitely 3 years ago under this current administration. You’re right about the EPA kow-towing to campaign contributions. This also has to stop.
Paraquat, along with many other toxins, has no place in our environment. Continual use is gravely detrimental to our collective health and must be halted. Please consider taking action!