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afroney

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afroney last won the day on January 18

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About afroney

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  1. PT was extremely beneficial for restoring some of my lost balance. I walk with a cane as well bit embarrassing, but better than falls and broken bones.
  2. I first ran into pressure sores during an extended stay in the hospital. Their beds really were terrible. The nurses tried their best to turn me frequently and assist me with occasional walks, but I was in really bad shape. I was realeased to home Hospice care. My latex foam matress is really good about not creating sores. Might be something to consider. However, a latex matress is harder to turn over in during the night. I installed a device in the ceiling that resembles a hanging trapeze bar. Really helps, as I can grab it at night to turn myself over.
  3. My first documented symptoms started when I was 21. Was having chronic insomnia and injuring myself acting out my dreams. I was diagnosed with REM Sleep Disorder during a sleep study (often one of the first indicators of PD). From 21 to 25, I was having problems with feet shuffling and slowness while walking. To the point my coworkers were noticing. Saw a ton of doctors who couldn't figure out what was going on. Around 25 the dystonia started. My body developed a "lean", I was tripping over my own feet. Neck and shoulders really started to hurt on a daily basis. Cramps in my legs and feet were waking me up at night. Finally saw a competent doctor who concluded something was off. She thought stroke or MS. MRI of my brain and neck, along with a lumbar puncture ruled both out. I noticed a loss of smell and a resting tremor around 27. Finally got to a neurologist who determined it was Parkinsons-like. Tests ruled out heavy metal poisioning, Wilsons Disease, and Lyme Disease. Got a second opinion, who confirmed the PD diagnosis. My first doses of Sinemet felt miracle-like. Do you have relatives with PD? Im told very young onset cases of PD tend to be genetic. My Dad has PD, and my Grandmother had it as well. Kind of strange having PD at a young age. People tend to stare at a 31 year old hobbling along with a cane like a 90 year old man. I'm also officially retired and will never return to work. That part is actually kind of nice, much to my surprise.
  4. Don't know about motion sickness specifically, but CBD oil does a pretty good job of supressing nausea (and the resulting vomiting) associated with my recurrent CDiff infection. Klonipin eliminated my issues with motion sickness when I first started taking it years ago. If CBD oil doesn't work, benzos might do the trick. However, Ive noticed that CBD oil 'feels' very similar to a high dose of Klonipin in terms of relaxing muscles, reducing anxiety, and making me sleepy. I have not noticed or read of any interactions with PD meds. CBD oil does tend to make alot of people sleepy, like MJ. Myself included. If you try it, I wouldn't drive or operate machinery until you know how it affects you. Bit off topic, but it works really well for temporary relief of my dystonia. Better than any pill Im perscribed. Effects are almost immediate and last a couple of hours.
  5. Yeah. I have private insurance through my former employer. They basically pre authorize a set number of visits per week. Not looking forward to Medicare.
  6. Yeah. It's why I'm glad I'm not married. Might want to discuss your husband's agressive behavior further with his Neurologist and PCP. I had some issues with agitation. Most of it was infection and pain related, some PD related. Pain meds, antibiotics, and Nuplazid took care of 90% of the issue.
  7. And some don't experience dyskenesia at all. Dad has been taking Sinemet for nearly 20 years now and has managed to avoid that side effect, in spite of the extremely high dosage he takes. I experience it very rarely, and it only manifests in my legs. The nauesa thing tends to settle down after a couple of months following a dosage increase. At least for me.
  8. Yep. I was vomiting multiple times daily for 9 months from surgical complications and Cdiff. Couldn't absorb any of my meds, which put me right back in the hospital. Zofran was the key for keeping me out of the hospital. It acts very quickly, so I could take it on an as needed basis when I felt a bout of nausea coming on. I'd make sure to get Zofran and not Phenergan. A ton of doctors don't know that Phenergan is contradicted with PD, as it blocks dopamine. I was initially put on Phenergan, and it would completley knock me out for 12+ hours.
  9. Years ago, I had a Dr. perscribe me Adderall out of the blue. I was complaining about fatigue and troubles concentrating (the start of PD for me) Diagnosed me with ADHD after 5 minutes of speaking with him. Didn't order any tests, didn't refer me to a psychiatrist, and didn't request any followup appointments. I found myself a new PCP. That said, I don't think its too far of a stretch for this type of thing to happen to the poster in this case.
  10. The THC free CBD oil works very well for me. Less side effects than normal MJ.
  11. The CBD oil I buy is THC free. All the stuff I see locally is.
  12. The Klonipin doesn't help me sleep anymore. Still good for the myoclonic seizures and REM sleep disorder, but I hear CBD oil helps with that too. Id say CBD oil makes a good supplement to Klonipin. CBD oil is very relaxing for me, especially with muscles and nerves. Not sure what its future is going to be with the DEA placing it on schedule 1 with MJ. The local stores are still selling it though.
  13. The mask might be too tight. I struggled with my Resmed machine. They had to set the pressure to maximum, which forced me to cinch the mask down very tight to avoid air leaks. Everyone was giving me crap about the mask imprints on my face. The Phillips upgrade allowed for a much lower pressure to treat my central apnea. I could loosen the mask straps, which got rid of the pain at the base of my skull and the red mask imprints on my face.
  14. I've tried both Miralax and Ducolax. Both are ineffective for me when taken at the recommended daily dosages. Blackberries, blueberries, lots of vegtables, and exercise are far more effective than laxatives for me.
  15. LRRK gene mutation for me. PD runs in my family.