Parkinson's Movement
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Still achieving!

When I was diagnosed nearly eight years ago I feared my life as I knew it was over. Yet this morning I walked to the front at a big civic remembrance service and conducted my choir in a performance of a piece I had written and composed. I've taken on more piano pupils and am learning watercolour painting and Italian! If I'd known this eight years ago I wouldn't have worried! I just wanted people who have been diagnosed recently not to worry. Don't let yourself be defined by your diagnosis.

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Good for you!

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Well done you...............:) Keep on 'truckin'.........:)

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Are you on medication? If so, how fast after diagnostic did you started medication?

Thank you.

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Well put. Thank you for that!

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It sounds good.thanks for sharing such good news.shakir

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I'm so glad to know that you are doing so well. I think that is what we should all try to do--stay busy and active and interested in things.

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As Lawrence Welk says wonderful wonderful

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Thank you for that. I'm 37 with a 4&5 yr old, so I worry and am scared at times then other times I have this innate feeling that everything will be ok. It's nice to read that.

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Exactly right. IT's different for everyone however keep going, I have built a new business with my son, written three books, and do not have time for this imposter who takes over my body and makes its almost impossible to move sometimes.

I fight my way through and carry on with my ambitions. I am still in charge. !!

Do not give in - ever.

8 years now.

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Well done! Keep onwards and upwards!

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stay in the drivers seat and keep IT on the sidelines and you will remain in pole position! Well done for doing just that!

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That is inspiring Dap1948! Well done!

In that spirit, I am an ex-professional singer. I gave up singing about 20 years ago but since my diagnosis in 2015 I have taken it back up as well as Tango. My immediate goal is to sing a song (in Spanish!!!!!) and halfway through the song break into a Tango with my teacher. I have given myself until my birthday in March to learn it eek. I think a little bit of pressure is good for us (not too much)

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That's the spirit... manageable goals.

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Thanks, Daphne for your positive message. You're inspiring!

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Excellent news that thanks for sharing.

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Dap1948 I'm glad you have the right attitude! I was diagnosed in 2013 and continue to surprise everyone. Recent research indicates the right gut bacteria might slow down the progress of PD.

I have weetbix, bee pollen and cinnamon for breakfast, plain Greek yoghurt with frozen blueberries at least once a day, curcumin, olive leaf extract, my Sinemet CR, plus b vitamins at night. Sinemet controls my tremor, 99% of the time, and feeding my gut bacteria helps as well.

I have a long list of other health issues as well, but I carry on regardless. Even my cancer spots are growing very, very slowly. It is very important to remain positive. If a bumblebee knew the rules about bodyweight to wingspace, the bumblebee would not even try to fly.

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What gut bacteria do you use and how did you find them? My husband also believes the gut bacteria have something to do with parkinsons...help!

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I take Bio-Kult which I buy from the internet. It contains 14 different strains of live bacterial cultures and I take the maximum dose of 4 a day. It also doesn't have to be kept in the fridge so is ideal for travelling. Each capsule contains 2 billion microorganisms.

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Whole wheat fibre, cinnamon, bee pollen granules, curcumin and olive leaf extract feed the good gut bacteria, and a good plain yoghurt helps to improve your bacterial mix.The strains in the yoghurt I take include Lactobacillus acidophilus, Bifidobacterium and Lactobacillus Caseicidophilus, Bifidobacterium and Lactobacillus Casei. Try to find a good plain Greek style yoghurt that has live bacteria. The Greek style has been strained, and is concentrated.

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I have taken Allign probiotic from the drugstore for at least 10 years. I think it may be a reason my PD is mild (I was diax about 2 years ago--this Feb will be 3 years).

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Fantastic!! That is quite an inspiration to me, because I am a trained musician and have had to cut back on performing etc, because of PD and Ataxia symptoms!! Continuing on with making music is definitely a good thing!!🎶

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Making music is so therapeutic. I don't often put myself in the stressful position of public performance though, which can be non-therapeutic! However playing music at home, feeling its emotion, exercising the fingers (what do you play?), reading new music and exercising the brain... all good therapy.

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I play the organ.. it seems like I didn’t play for months if not longer..I have played since I was 12..I’m 66 now.. and for the past yr..could not play a note..couldn’t even read the music. We didn’t know it was the Parkinson’s. My insomnia for all these months was a Blessing in a way...I played hrs and hrs and have recouped. I receive so much peace from this instrument that had caused me such stress ...this is only a Blessing from God.

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Making music is so therapeutic. Long may it give you peace.

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Thank you so much!

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I had not thought about exercising the fingers with playing. I guess cooking can do that too. Maybe we should consciously move our fingers--well, even typing on the computer does that.

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Thank you for this!! It is so awesome to see success within the Parkinsons group, I too have a determined attitude about this disease and i am not letting it get the best of me.I have a new granddaughter that i plan on spending alot of good quality years with!

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Thank you for this, it's nice to see someone thriving. I almost think the fear is more debilitating than the disease.

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I believe that if you expect to get worse, you will. And the medical profession don't help in this!

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Totally agree.

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Thanks for sharing the many useful specifics of your health regimen. I will happily bring more music into my life, pronto. But I am also fascinated by the mental component you mention.

My symptoms, which only two months ago seemed almost imaginary (save for a tendency to list to the left) multiplied quickly after finally seeing a doctor. It may be the effects of the Azilect prescribed by the movement neurologist immediately after a DaTscan confirmed his diagnosis. (That was only 3 weeks ago.) I am now fuzzy-headed in the morning and tippy. Or it may be the fact that I am 80 and possibly have the non-tremor form of Parkinson's which alters, as I understand it, memory and psychological well being. I do think the terrible panic and despair I've experienced since my diagnosis lifts though in happy circumstances, say with family. Doctor is too grand and furtive to discuss any of this.

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Your diagnosis is very recent. Don't underestimate the effect of the shock of the diagnosis. I went downhill very quickly after the diagnosis. I felt very frightened. I totally lost my confidence. Slowly I picked up as I learnt what the new me could and couldn't do. It's been quite a journey and I'm a totally different person now compared to eight years ago. I lead a full life again, though I often do too much! My daughter sent me a text the other day saying she was proud of me. It was so sweet I cried!!

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Yes, you're right. It's too recent for me to have any real perspective. And good to be reminded that a sudden rush of symptoms might just come from shock.

Your history of these last eight years and your spirit will help me on this journey.

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can you tell us your medication regimen from the beginning? We would all like to do as well-thanks

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Ah if only life was that easy. We are all different and different things work for different people. To answer your question I take 1 mg Azilect, 100 mg madopar 100 mg of levadopa from mucuna a day. I take vitamins and minerals, coconut oil and probiotics. I walk, I play piano, I do yoga and deep breathe. I give thanks for my current state, which I believe is good. I wish I knew what was working, then I could give up what wasn't!

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Awesome! Thanks for sharing your inspiring message!

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I would be interested to know what meds and or alternative treatments you are taking! Wonderful to hear a positive outcomes!

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I take 1mg Azilect, 100 mg madopar and mucuna equivalent to 100 mg levodopa daily. I take basic vitamin and mineral supplements, probiotics, coconut oil and blueberry juice. I have acupuncture, Bowen, cranial osteopathy and massage treatments. I walk, do yoga, play piano and do belly breathing exercises. That's about it!

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Sounds like a great regimen. My husband takes sinemet, not sure why the doctor chose sinemet over madopar, but I think the sinemet is causing some dyskinesia. We tried to replace some sinemet with mucuna but mucuna made him feel nauseous so I don't think he will try it again. Also, hard to know what dosage of mucuna to take. I know his Delay the Disease class and physical activity makes his movement better.

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Mucuna must be taken with food to avoid nausea and you need to calculate how much levodopa the particular Mucuna provides. A friend of mine takes 3 whole grams of levodopa from mucuna a day so needs to take a capsule that is 99% levadopa. As I only take 100 milligrams I can afford to take a capsule which is 15% levadopa because I believe the other ingredients in mucuna are also beneficial

I think we tend to take madopar in England while sinimet is popular in the states.

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We did try to take the 99% mucuna but was either too much or he needed food with it. Our understanding was food can decrease the effectiveness of mucuna but maybe if he just stays away from protein and sticks with fruit for an hour or so.

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I just eat normally and so does my friend on the big dose.

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Ok good to know! Maybe it's just the sinemet, not mucuna, that you have to wait an hour after taking it before you should eat.

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