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deltsea

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deltsea last won the day on February 15 2016

deltsea had the most liked content!

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About deltsea

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    Advanced Member
  • Birthday 10/24/1966

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  • Gender
    Female
  • Interests
    Tennis, Gardening

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384 profile views
  1. My very first symptoms of PD were my toes on my left foot curling under it was annoying then and it's even more annoying now . I've been going to my MDS for Botox shots once a quarter . She's only actually hit the muscle once. I could feel the Botox going in like heat running down my leg or like Anastasia goes into your body before surgery . I had excellent results that one time and my toes literally didn't curl for the entire quarter. The other three times I had moderate to no results at all. Botox shots are very expensive and it is hugely disappointing when it doesn't work. I also take 1 Valium pill at bedtime to relax my muscles. This works on ny toes When the Botox does not what I'm wondering is what do other people do for dystonia and toe curling? Does your MDS give you the Botox shots or does the podiatrist or somebody else ? Should I just switch the valium entirely has anyone tried that ? Help!
  2. Scared about meds

    The first thing that I had to adjust for was brushing my teeth. I could no longer move the brush in circular motions. The quick easy fix was an electric toothbrush. Then I could no dry/style my hair with my circular brush so I got a different hairstyle and wore my hair straight. I started dragging my foot and tripping frequently, so I started wearing sneakers more and more. A lot of little things that no one noticed but me. Before I started taking medicine I couldn't always cut my own food, I couldn't clap my hands and both my children played high school and travel sports. The last straw was when I was having difficulty turning the steering wheel. Literally the first day I took mirapex all those symptoms went away. I never experienced compulsive behaviors, but I definitely had sleep attacks. I once fell asleep while I was talking. I believe it's time to start/change medicines when your quality of life is being impacted. Delta
  3. Scared about meds

    I agree with Stump and here's my add. I was able to push through my symptoms for the first 6 years no drugs. There came a time when i could not safely drive any more and I started mirapex. Over the last 6 years my drug intake has progressed as my symptoms have progressed. I have always exercised from being a 6 sport athlete through junior high to a 3 sport athlete in high school. When I was diagnosed I was playing tennis 4 days a week, yoga 1 a week and an hour cross training class twice a week. I can assure you exercise may slow progresion of PD but it does not stop it. I have remained stable for the last 2 years on the same dose of rytary and mirapex . I take 9 48/195 rytary a day and still have 2-3 hours of off time. I infrequently get dyskenisiias but consider myself lucky to be able to take so much rytary without too many problems. I tried 10 rytary a day for a 2 week period and had to quit because I became disoriented and kept passing out due to low blood pressure. so yes exercise all you can. I still go to Rock Steady boxing 3 days a. Week, play tennis once a week and ride my bike 6-8 miles 4 times a week. But as time goes by, you will probably have to take some medication. Don't fear it, but do prepare yourself for it. Medication is not any sort of failure on your part. It is simpler addressing your disease and improving your quality of life. Delta
  4. A question to ponder...

    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
  5. Dystonia

    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
  6. Ouch!

    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.
  7. Lost......

    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
  8. question to the ladies

    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.
  9. Good morning!!

    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!
  10. Good morning!!

    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
  11. 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
  12. Finding Research Doctors

    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 http://www.parkinson.org/expert-care-research/centers-of-excellence/listing 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
  13. Rytary

    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.
  14. Rytary

    Noah Do you take the3 rytary plus 1 sinemet or do yuk take 2 rytary plus 1sinenet?? Delta
  15. Rytary

    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
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