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Hi from New Zealand
Last Post 03 Feb 2015 05:38 PM by Retta Beery. 19 Replies.
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kiwigirlUser is Offline
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20 Mar 2014 07:07 PM
    I there I am from NZ I was diagnosed with Segawa's Dystonia when I was 16 years old. I am now 38 and the meds have been wonderful. Before diagnosed I was in an electric wheelchair, helped with toileting and feeding. I am a proud at home Mum to a wee 4 year old boy and loving life. This site is really interesting it is great to maybe be in touch with others with DRD. As far we are aware I am the only in in NZ with it, so can be kind of lonely at times.
    Retta BeeryUser is Offline
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    20 Mar 2014 11:11 PM
    Hello,
    I'm so happy you found our site. Have you found the Dopa Dystonia Facebook group? There are people from all over the world that are posting in that group, as well. I'll be praying that some others, from New Zealand, will see your post and reach out to you as well.
    Retta
    Retta BeeryUser is Offline
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    20 Mar 2014 11:13 PM
    Are you only taking the Sinemet (Levadopa/Carbidopa)? Do you remember what dose you started on and could you tell me what dose you are currently taking? Has it been effective for 22 years?
    Thanks so much for sharing your story!
    Retta
    kiwigirlUser is Offline
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    21 Mar 2014 12:07 AM
    When I was 16 I was taking only 1/2 pill in the morning and at night 100mg+25mg. Yes I take Levadopa/Carbidopa. It has been very effective but as I have got older I need a higher dose. Especially with busy parenting and keeping active. I also do get some body pain if I do not have enough meds on board. My health is also better if I do not work now as well. Great to be here thanks for having me. Have told my mum about the site. She will join so she is a great support and resource.
    kiwigirlUser is Offline
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    24 Mar 2014 03:33 AM
    Hi Retta can I ask with Noah and Alexis is this the first time in your family the Dystonia showed up?

    Iam the only child my biological birth people had. Hence I am the only one who has the dystonia. They together and all there family very healthy.
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    24 Mar 2014 03:34 AM
    So the dystonia started with me and ends with me.
    kiwigirlUser is Offline
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    28 Mar 2014 06:46 PM
    Morning Retta, I wondered our many active members on this site you have that have Dopa responsive Dystonia and are on sinemet?
    kiwigirlUser is Offline
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    28 Mar 2014 06:46 PM
    How many I meant sorry
    Retta BeeryUser is Offline
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    31 Mar 2014 12:14 AM
    I'm so happy to hear that your mom will be joining the site as well. I'm not certain how many active members there are at this point, but I'm happy to hear that you and your mom will be a part of the community.
    We increased Noah and Alexis's dosage many times over the years. They are doing so well. We do have their blood drawn, about once every 6-9 months, to have some of their levels checked. It's not the most accurate test, but it gives us a good idea of where they are at.
    Noah and Alexis are the first in our family with Dystonia. They found a genetic mutation in me and one in my husband. Noah and Alexis got one "hit" from me and one from my husband, in the same gene. That genetic mutation is in their Sepiapterin reductase gene. This mutation is responsible for their low dopamine and serotonin levels. Because of this, they both take Sinemet and 5 HTP (a serotonin precursor).
    kiwigirlUser is Offline
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    03 Apr 2014 08:20 PM
    Hi Retta

    Thank you for your response and it is so great to be able to ask questions. I wondered if I could ask how much 5 HTP dose does Alexis and Noah take?
    Retta BeeryUser is Offline
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    03 Apr 2014 09:27 PM
    Noah and Alexis take 50 mg of 5 HTP 3 times a day, when they take their Sinemet. They take the 25/100 mg of Levadopa/Carbidopa, 1.5 pills 3 times a day. They also take a small amount of Lodosyn with their doses (extra Carbidopa so that more of the L-Dopa will get to their brain.
    Retta BeeryUser is Offline
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    03 Apr 2014 10:39 PM
    Also, wanted to add that every individual is dosed differently and with different medications. I am certainly not a doctor and am not advising that anyone take the same dosage as Noah and Alexis, or the same medications. Just sharing what they are taking, as individual patients.
    Thanks,
    Retta
    kiwigirlUser is Offline
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    03 Apr 2014 10:43 PM
    Totally understand its just interesting to know interesting I also take a medication called Amitriptyline HCI tablets 10mg I find the really help on top of the Sinemet. I take 1 tablet at night
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    02 Aug 2014 10:35 PM
    Hi there everyone

    Just popping in to say hi, and give a little update. I had a check up with my GP few months back and due to some pain at night and dragging of my foot at night. He has uped my meds and it has all settled down. Having a busy 4 year old is like a full time job on my body. So the increase has been just what I needed. So 2 whole pills in the morning, 1 at lunch time and 1 at night has been the key.

    Hope everyone is well out there and thinking of everybody out there with loved ones struggling. God bless
    Retta BeeryUser is Offline
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    07 Aug 2014 01:22 PM
    Thanks so much for sharing your journey with all of us! It's hard to imagine going through such pain while caring for your little 4 year old! We are praying for you and your family. Please keep us all updated.

    God bless you and lead you!
    Retta
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    22 Aug 2014 10:08 PM
    Thanks Retta for your reply.

    I was always told that for my body to do all the things I do was a big push on it. Also getting older you know, I have been on my meds for a long time so it is a real balance. The key for me still to this day is a balance of rest, good sleep and taking care of myself. I haven't worked outside of the home for about 8 years now. That has made a huge difference on my body. I always worked in the disability field in hospitals/community and loved it. But the heavy nature of the work just took it's toll on my body. I adore being a full time mum it is a real joy our wee one goes to day care 4 days a week 9 - 3. It means I can come home do some exercise then rest or jobs around the house, meet a friend for coffee before pick up etc.

    What does take it out of my body is sleep depravation. My body must have a lot of sleep. So I make sure I'm really organized so if wee one has a bad night everything is all sorted. Dinner, housework etc. Luckly now wee one is 4 those night do not happen as much as those days when wee one was a baby.

    It is a great life I feel very lucky I must say
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    02 Sep 2014 07:32 PM
    It is so good to hear how much you are able to do, especially with your child!! Sleep restores your dopamine levels, so it is imperative that you always get good sleep or make up for it when you don't. My daughter and son are living testaments to that fact.
    You have such a wonderful outlook on life, which is so fantastic! We are praying for continued blessings for you and your family.
    Warmest regards,
    Retta
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    31 Jan 2015 03:49 PM
    New Years Greetings to everyone out there. I thought I would post an interesting update this morning. We went to friends for a BBQ the other weekend and my friends husband is from Wales. His parents were out from Wales and we meet them. His father was very interested to talk me with me about the Dystonia. (He is a Gyne/oncologist with specializing in Genetics as well.

    He said he had met and treated quite a few patients who had the DRD throughout the UK. Some of the people they have treated over there do not respond as well to the Sinemet. He agreed it was the right decision not using me to have our wee one as the mutation could have mutated differently and could not have worked at all for our child. We were always advised having children naturally was a big gamble and they were never sure how much meds I would be allowed during pregnancy. That as soon as I had IVF it would be bed rest the entire time.

    I told him years ago the genetic specialist wondered if part of my mutation was also why gyne wise I had so many problems and they were linked. He agreed they would be linked. I had a hysterectomy at 37 my 4th major surgery down there. He asked if it came back cancer free I said yes to our relief. I asked him about my breasts as I was concerned whether the mutation could effect them. He replied no my chances of the breast cancer are just like any other women but definitely my stomach is he will be contacting me once he gets back to Wales with more information. The Drs here haven't been able to answer those questions as they just do not know. He was great to talk to and I am feeling really good.

    Also I am starting on the journey of writing a book about my experiences so that is exciting and a bit nerve racking. Watch this space

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    02 Feb 2015 03:49 AM
    Hi Retta, can I ask many years ago I had contact with a lady by the name of Amy Haynes, she lived in Milpitas CA. She also had DRD we lost contact many many years ago. I was wondering if you know of her. She had 5 children (I think) 3 out of 5 also had Dystonia and she also took Sinemet. She was in a wheelchair till she was 46 if I remember rightly. I have looked on Goggle and I can see her so far then the sites do not let me in any further with the white pages. She could even maybe be on this site. A bit of a long shot but just wondered. May thanks
    Retta BeeryUser is Offline
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    03 Feb 2015 05:38 PM
    Hello,
    I don't know Amy Haynes - sorry. I appreciate your posting as you never know if someone else may know her. I didn't find her on our site either.
    Thank you for posting your update last month. Keep us updated about your book.
    All the best,
    Retta
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