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EllenR

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About EllenR

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    Scottsdale

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  1. New guy here - a journey I'd like to avoid

    Hi Super, All that matters is what's happening to you. Strive for peace in the house. Anxiety and stress makes things worse. Your wife is likely going through her own fears about your and her future and that's her journey. All you can control is you . There will likely be other accommodations you will both need to make and hopefully they'll be met with tolerance and compassion. My sense of smell deteriorated over a long period of time and I didn't even notice it for a long time until one day I walked into my favorite Italian restaurant and didn't experience the automatic salivating at the wonderful aromas. I thought the restaurant had changed but, sadly, it was me. Try not to shoehorn your symptoms to descriptions of PD or vice versa. Let the doctors do their job. I kept a journal for the first year and a half and made brief entries when there was something new, no matter how small, or just to say that nothing had changed in this or that area. I brought the journal to doc appointments and we discussed it. It helped me see the big picture.
  2. New guy here - a journey I'd like to avoid

    Hi Superdecooper ... the first question my neuro asked on my first visit was, "How is your sense of smell?" I told her I'd lost it 6-8 years ago. She later told me, after the diagnosis, that it's one of the first non-motor symptoms of PD. All the posts here offer great perspective and you can see everyone's journey is different. My experience is similar: starting with physical therapy for a "pinched nerve in the neck" which turns out I didn't have and which didn't do any good. But after two months, the PT suggested seeing a neurologist. Then the tests, the DAT scan, the diagnosis. Had all the Bradykinisia symptoms. A story like so many here. Exercise for me is the most important thing I do to keep up strength, flexibility and dexterity. Something every day - walking, swimming, weights, stretching. I added Rock Steady Boxing a year ago which is great plus meeting other PWP. I can't recommend it highly enough!! You'll make your way to doing what's best for you. I've asked questions on the Forum, stayed open to new ideas. For me, finding a spiritual perspective of acceptance helped greatly. That and exercise keep me going every day! Stay connected, handle one thing at a time, you'll do fine!
  3. Hair loss and stress and PD meds?

    Thanks Pathfinder. Which brand of hair and nail supplement do you take?
  4. Several months ago clumps of hair came out in my hands as I was shampooing. Never experienced anything like that and since then my hair has thinned out a bit more. I'm on Sinamet 25/100 at 6/day. The hair loss coincided with a combination of negative and positive stresses dealing with a wonderful relationship (combining households) and my mother - each its own stress and then the two mixed together creating another stressful dynamic. I've experienced stress of course but never hair loss. I know stress - even good stress - activates PD symptoms and I've experienced that. I don't know what I was thinking that I didn't go to the dermatologist but I will now. Has anyone else experienced this weird combination of meds, stress and hair loss? Or maybe I'm reaching and this has nothing to do with PD? Will appreciate any comments.
  5. Music and Parkinson's Disease

    I haven't been on the Forum in quite a while and the music topic is exactly what I needed to hear, thank you. I studied piano as a child and teenager, did well at it, enjoyed it greatly but interests changed at 17 years old and the piano fell by the wayside. Only YESTERDAY I was at a store in my neighborhood and never noticed the store across the street - Guitar Center. I went in and saw a huge room full of electronic keyboards. There's even headsets so you can play as loud as you want without bothering anyone in the house. I sat down to run some scales and my fingers stumbled awkwardly over each other. But the finger memory was still there and I remembered the sharps and flats. I realized this would be a great activity to improve dexterity and hopefully even get back into the joy I once had playing piano. The search is now on for the keyboard. I participate in Tremble Clefs singing group for PD and it's improved voice projection and throat muscles.
  6. 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".
  7. 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.
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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!
  14. 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
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