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deltsea last won the day on February 15 2016

deltsea had the most liked content!

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104 Excellent

About deltsea

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    Advanced Member
  • Birthday 10/24/1966

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    Tennis, Gardening
  1. I am a talker and I definitely inherited that from my mother. I'll talk to anyone about anything . If I see someone looking at me funny because of something I've done or how slowly I'm moving i'll just say "I have Parkinson's". I've never gotten a negative response sometimes people ask me questions sometimes they don't. If they ask questions I'll always give them a truthful answer. One day One of my husbands coworkers caught her spouse asking me questions about PD. She chided him and told don't ask her questions about her medical condition again . And here I was thinking it was great that now he knew more about my condition because we frequently travel with them so it's been very helpful that he understands more about what I'm going through. Truthfully I think my coworkers spouse knows more about my PD than my own spouse. So really I just want people to ask anything that They don't know or understand. Delta
  2. I started on Mirapex for my dystonia and moved on to sinemet after about 1 year. Dystonia is my main PD problem and always has been. I was officially diagnoised 6 years ago and now I take Mirapex and rytary. I also take 5mg of valium at night to stop the cramping from the dystonia and once a quarter I get botox injections in my leg to lessen the dystonia in my foot. As my medications wear off my dystonia starts in the toes of my left foot. If I don't get medicine in me quickly it moves up to my left ankle then calf, next my back cramps up and just recently my neck has joined in the fun. You still have lots of options to control your dystonia. My next move will be DBS Delta
  3. I hope you're feeling better!! Two comments. I also go to Rock Steady Boxing and we practice falling also. I was playing tennis last week when my body decided to go for a ball and my feet didn't get the message. I tossed my racquet, put my right arm on the ground, then right knee, rolled over then left knee and pushed myself back to standing with my left arm. My opponents said it was the most graceful fall they had seen on the tennis court. Practice makes perfect!! I skinned my left knee was all and finished the match. Rytary- you really need to be prepared to give it 2 months. When it's good it's good! When it was bad-nausea, vomiting, passing out from extreme blood pressure changes from moving from laying to sitting to standing. My blood pressure could go from 110/65 to 70/44 when I would stand, panic attacks- it was really bad. After about 2 months the bad things disappeared. The only thing I do a little different is if I take a dose and it doesn't work within the first 45 minutes that dose usually wouldn't work at all. Now at that 45 minute mark I take 1/2 of a 25/100 sinemet and it "rescues" the rytary. The 1/2 sinemet usually gets me 'on' within 15 minutes. I've been taking rytary since July 2015. I take the 95's 3@7:30am. 3@11:30am. 3@4:30. I've adjusted the timing but I've been on this same dose the whole time.
  4. I saw doctors and neurologists for 6 years before I was diagnosed. They kept telling me I had MS, but the 4 MRIs I had proved otherwise. The last neurologist I saw told me I had a stroke, but he couldn't explain how and why my symptoms had progressed continuously over 6 years if I had had a single stroke. At one point he had mentioned the possibility of PD. When my husband and both independently researched PD, and we knew we had the answer. At my next neurologist appointment I said I had read up on PD on the internet and I asked why he had ruled it out. He told me I shouldn't read about healthcare on the internet and told me to take 1 baby aspirin a day. That day I called my PCP and said I needed to find a new nuerologist. I had heard about an MDS at the state university. It took me 5 months to get an appointment, but he confirmed PD within 15 minutes. Don't give up. You are your best advocate. It was bitter sweeet, but at least I started treatment that day. Many standard neurologists are not well versed in PD and are very reluctant to diagnose such a young person. Find a PD center of excellence or at the very least an MDS. You may have to wait months and drive hours but it is the best way to find out what is happening to your body and how to best move forward. Good luck
  5. I read this topic a while back and thought 'well good thing I don't have an isuue with this.' Boy was I wrong! Sat, Sun and Mon were just plain "off" days for me. No matter how I spaced my rytary and my 2 sinemet(as needed/when needed) I was experiencing about 4 hours of off time a day. Tues showed up along with my period and I have been "on" since then without taking any of my as needed sinemet. I've learned so much here and it truly helps with my quality of life. Thank you all for sharing your experience. Delta.
  6. Just having a little pity party for myself today, sorry no one else is invited. It just me (still in bed at 1030am) and a 56oz Costco bag of m&m's. With such bad company this party will hopefully be a short one. It makes me feel better to come here and see how well everyone is doing. Thank you my friends!
  7. Hi to all!! It's been a long time since I've posted here. I'm more of the voyeer type, but it's always nice to read. JB your writing is incredible and your poem brought tears to my eyes. I consider the posters on this site to be my friends and my strength. You encourage me to try my best each day to fight Parkinsons and to be a role model to those around me My knee replacement surgery in February has increased my mobility greatly and I work out at Rock Steady Boxing 3 days a week and I'm back playing doubles tennis 1 day a week. I'm jealous of all your gardens and the fresh fruits and vegetables. It reminds me I need to start eating better. Thank you to all of you who take the time to post here. There are lots of us silent members who benefit greatly from your posts! Delta
  8. I've been on rytary over a year now. I was up to a combination of 18 25/100 generics and cr's along with 2 selegiline and 3 pramipexole per day and was still having significant off time. I now take 9 rytary 48's and 3 pramipexole and 1 25/100 a half at a time and I'm covered from 730am to 1000pm. It's been a long hard road with rytary with lots of experimentation. I've found a fixed time schedule is not very effective. I have to take it when I "feel" the need. I can't quite explain how I know I need it but I have about a 5 minute window to get it in my system when the feeling hits me. This would be very hard for a caregiver to be able to determine when their spouse would NEED rytary. I take my first 3 pills between 7-730 whenever I wake up. Second dose is sometime between 1030-1200 depending on when I feel the need and whether I'm working out or playing tennis during that time frame. Third dose is between 4-5. I almost always have to take half of a 25/100 shortly after dose three to kickstart it. I also like to take a 30 minute nap then and I almost always wake up on. I frequently need the other half of the 25/100 between 7-9 to keep me going if I have late night plans. My doctor originally told me to take the rytary at 7am, 1pm and 7pm. I was constantly I off and was ready to give up. I will agree with others the price is crazy high
  9. I've had my best luck going to university medical schools. You also will do well at a Parkinson's center of excellence but they are not in every state. At the very least make sure you're seeing a movement disorders specialist MDS I've gone to the univ sof virginia, the medical college of virginia and Indiana university hospital and have been very happy with my doctors and the time they have spent with me Delta
  10. Optomist I lost my sense of smell years ago. However when I was on regular sinemet I was convinced I was smelling curry in the mornings when I woke up. In fact it was so bad that it would often vomit first thing in the morning. My daughter who lived with me insisted she smell nothing . That just kind of randomly went away and I have not noticed any smell with the rytary.
  11. Noah Do you take the3 rytary plus 1 sinemet or do yuk take 2 rytary plus 1sinenet?? Delta
  12. Noah Thanks for the post. I hadn't thought of it that way but I think that may be my issue also. I'm going to try a REG sinemet with my 2nd & 3rd doses of rytary. I don't seem to have the problem in the morning. Delta
  13. I've been on Rytary since last July and I would still consider dosing a work in progress. I'm taking 3 x 48.75 3 times a day. My dose also seems to last 4-5.5 hours and it seems to last on the longer side when I don't eat an hour before or an hour after rytary. My issue is that if (more like when) i go off, it takes between 2-6 hours for medcine to bring me back on. So my goal has been not to go off. But, I'm already taking soooo much medicine and I'm only 49 so I'm trying to find a way to stay on all day wth a minimum of extra rytary or sinemet. So far my best dosing schedule is somethong like 7am 3 rytary 11:30-12ish. 3 rytary 4pm-5pm. 3 Rytary 7-8pm 1 sinemet 25-100 Everything seems to work a little better if I load up on the rytary earlier in the day and just kind of float in lightly til bedtime. I know some of those timeframes are huge but my toes give me a tingling feeling when I'm just starting to wear off. If I take my meds immediately most of the time I can prevent the wear off. This isn't perfect but it works more often than not, but I like most of you am here reading looking for a better way. Delta
  14. Bbvy
  15. Don't wait for tomorrow for what you can do today. EXERCISE has been my biggest game changer. You don't need a special Parkinsons class (although I love Rock steady boxing), you don't even need to wait until summer to start a class. Only you or your doctor can say for sure but it sounds like you could start walking today. No Gym membership no special equipment no cost just your time and your effort. Start with a reasonable distance maybe a mile maybe a walk down to the mailbox but start. Building my strength up has been a godsend I feel like I can do more and I feel normal . One lesson learned don't exercise during your known off times. I can no longer mow the lawn but I can hire the lawnmowing contractor and I can manage the contract myself . Think of other little things like that that you can do and there's plenty of them I agree with the others focus hard on your disability application treat it like a job. We would all be sad sacks if we focused on the things we can't do , but there are so many things we can do. I encourage you to keep your eye on those things and you'll feel much better !