Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

Community Reputation

4 Neutral

About EllenRosen

  • Rank

Profile Information

  • Gender
  • Location

Recent Profile Visitors

100 profile views
  1. A Journey Round My Brain

    Thank you! Being Ashkenazi, I signed up for a clinical trial near me but while I fit the profile 100% they didn't need me "just yet".
  2. Cannabis CBD Oil

    I was diagnosed three years ago. Started Sinemet two years ago, 25/100 5xday. I'm one of the small percentage of PWP who doesn't have external tremors. But at the peak of wearing off period, the RLS is awful and extends to my arms as well. Nighttime the worst. Someone recommended cannabis CBD oil which I'd heard was helpful to those PD tremors. I don't have that. And don't have pain either although there's off and on cramping and aches during the day. Does anyone have experience taking CBD oil? Which symptoms does it help? Side effects? Dosage and hours? Opinions and comments? Appreciate it, thanks.
  3. Cramping pains throughout body

    After two weeks since the original posting, the cramping is back to "normal" meaning like what papa57 describes. That occasional cramping seems to have always come with the territory. But the all-over aching and cramping, almost constantly, has gone away. For now, I'll attribute it to stress. The couple of things that were weighing on my mind and needed attention have passed. My history includes an occasional skin rash from stress so the extra cramping makes sense for me. We're all different. I did take an extra Sinemet or two during that time and it helped. It's so hot here now and I'm not getting as much outdoors exercise as I'm used to and it's frightening how much I'm starting to feel the weakness in my arms and legs. Gotta get going with the weights again. As always I'm grateful for the forum and for everyone's comments. Ellen
  4. SInemet and Dizzy

    Hi Penny. The first three weeks of taking Sinemet were pretty brutal for me. It started with dizzy. Then came exhaustion, brain fog, sleepiness, nausea, forgetfulness, complete out-of-sorts and unfocused. I felt like I was a mess! But at the same time, after just 4-6 days, all of a sudden I could write and write legibly, I wasn't shuffling so much, not bumping into walls so much, dexterity improved, could type and work. In short, I was coming back to life as my body was adjusting to Sinemet. After 4-6 weeks, I was functioning at 80% and the biggest Sinemet symptom I had was tiredness for an hour after taking it. 80% is good enough for me. It's been 1 1/2 years on Sinemet and still it's the same sleepiness after taking the pill. Then I rally and I'm fine until the next time. The last dose is bedtime and it's nice to drift off in sleepiness. I get the best hit from the meds on an empty stomach so my med schedule is inbetween meals. Meals are much lighter than ever before as the gastric slowness makes me feel full and bloated hours after eating even if I don't each much. I've lost a few pounds in all this in the last year. The only other symptom is nightmares and I wake myself up yelling probably once a week. Considering all the possible symptoms, I'm grateful. In the beginning I did hide under the covers and cry, like you. I also exercise (walk, hike, weights) and I'm grateful for having done so my whole life and can just continue the best I can. There's muscle weakness and I lift weights as best I can. If I don't exercise I can feel the muscle weakness ... as if the muscle is hollow. Hard to describe the sensation. Yes, life in faith. I've never mentioned this on the forum and only to a couple of friends. But when I got my diagnosis, I experienced a psychic change after a month or two. All of a sudden there was this calm and peace and nothing bothered me anymore. I'm not a reactive person to begin with but with PD came this "oh well so what" response to being delayed in traffic or in the check-out line, or not getting a new client or missing a tv program I wanted to watch or all that little daily stuff. I can get slightly irritated for a minute at a crying baby in a restaurant but not like before where I was almost indignant and made my dinner-mates want to slap me silly. I'm not forcing an outcome. Just do the best I can and go with what happens. I didn't "try" to have a new attitude or perspective. It just happened. I've always wondered if anyone else experienced that ... but I don't want to hijack your thread and hope the responses stay on your question. All the best of good luck and peace to you!! Ellen
  5. Cramping pains throughout body

    Thanks Swamper. This PD is a lot to get used to, isn't it. Thankfully, depression hasn't been one of life's challenges for me. The stress weighing on me is just a client being (rightfully) annoyed at something important I forgot to handle. Until I make the wrong right and things are ironed out and I'm feelin' the love again, it'll weigh on me. Whatever the outcome is, fine ... it's the waiting that keeps me up. I like my neuro but I prefer the thoughtful and caring responses from everyone dealing with PD and their experiences. I trust the forum more. So thanks ... Ellen
  6. Cramping pains throughout body

    Hi Dianne Yes, it's worse under stress and I didn't think about that! Going through some stress now - mostly good stress but also a couple of things weighing on me - and that makes sense. I'll pay attention to the timing of the aches to see if they're during wearing off times. Probably are. Ellen
  7. Cramping pains throughout body

    Hi everyone. I was diagnosed in 2014. Taking Sinemet 25-100 4 times daily for 1½ years. I never had and don’t have external tremors and the Sinemet has taken care of all the bradykinesia symptoms. I’ve always had an occasional ache here and there in the muscles but not much or often. Since a month ago I regularly get these brief cramps in my muscles all over my body. I’ve read about dystonia, what it looks like and feels like, but what I’m experiencing doesn’t come close to that kind of pain and there’s no outward sign of spasms or contortions. The pain can be an ache on the side of the foot or upper arm, calf, top of the hand, backside, and all over. It throbs a couple of minutes and stops. It’s not painful (1 or 2 on a scale of 10) but it does wake me up at night and can be real bothersome when there's multiple aches going on at the same time. It’s not like muscle aches from exercise or a sprain. But it’s happening frequently now. The only change in lifestyle is a bit less exercising recently but that doesn’t account for aches on the side of the foot or top of the hand. I can’t find any description of dystonia that matches what I’m experiencing. And I can’t find anything that says what I’m experiencing is the progression of PD or the start of increased symptoms. Has anyone had this experience or know what this is all about? Thanks for any help with this! Ellen
  8. Sinemet wearing off

    Yes, thanks so much for your answer! I never thought I was clock-watching at night but when I think about it ... yes I am. So I accept that I need a bit more Sinemet (ok with the neuro since yesterday) and I stop looking at the clock at night. I look at the clock during the day in order to stay on schedule but if I start using the alarm function on my phone I don't have to clock-watch and could relax more. Some of the challenge is that my schedule changes daily with client appointments, work from home, friends, activities, and if I have lunch with friends at 11am (and can't change the time), the 11am dose has zero effect so that's when I'll shift the dose one hour earlier or later. Most days I can keep on schedule, some days it's a juggle. Taking a dose on an empty stomach gives has the best effect. Food within two hours of dose = much less effect. Thank you again ... it means so much to get a personalized answer!
  9. Sinemet wearing off

    My internal jitters are increasing inbetween Sinemet doses and my question is: does this mean my PD is getting worse or I need to increase the Sinemet dose? Is the Sinemet wearing off too soon and are the increased jitters the symptom? Diagnosed Sep 2014. In January 2015 started with Sinemet 25/100 3x day. In March I added 1/2 pill to sleep through the night. In May 2015, a year ago, I went to 4 pills a day. Usually felt some internal jitters as dose time approached but if I was working or with friends and activities I wasn't aware of the jittery feeling until nighttime dose approached. All good until last November when I started waking up at 1am-3am and would take an extra 1/2 Sinemet. In January 2016 started Sinemet CR plus the nighttime 25/100 Sinemet to sleep through the night. I try to not take the CR (1/2 or whole) at bedtime and usually can sleep through the night. All good until May 2016. Recently, my body gets agitated too long before my next dose is due. And it happens during the day which has never happened until this month. Normally my body only gets jittery-agitated before the nighttime dose. I'm not as exact with dose times as perhaps I should be? I try for 6am, 11am, 4pm, 9pm but it's not always so exact every day and I can be a couple of hours one way or the other. Currently at Sinemet 25/100 4x day with a whole or half CR sometimes at bedtime. Thank you! Ellen