Hi everyone!: Hi and thank you for allowing... - Cure Parkinson's

Cure Parkinson's

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Hi everyone!

Lionore profile image
28 Replies

Hi and thank you for allowing me to join the group. My symptoms are left hand tremor, weakness on left side fatigue and occasional left foot dystonia. So far I take Azilect only. I am 69 and recently retired. I exercise a lot, mostly classes in aerobics pilates and yoga and do some qigong. I feel pretty good but need rest most afternoons and sometimes have trouble sleeping. Seeking any and all suggestions that will delay having to take S/L. I eat mostly organic non processed food. A recent long distance trip left me with a nasty cold . I lack the energy to exercise when I feel sick. I am grateful to be independent and to have a supporter partner and fsmily.

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Lionore profile image
Lionore
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28 Replies
Astra7 profile image
Astra7

Welcome. Seems we have similar symptoms.

I was diagnosed at start of year at 51. I take azilect, magnesium and also NAC and feel pretty good unless tired or stressed.

Which country are you in?

Lionore profile image
Lionore

I'm in the US. On the advice of others online I take NAC, cq10, turmeric, vitamins Band D, green tea daily.

Retirement was a blessing. I held off for the extra money, but finally realized that I needed to exercise and destress more. I was all gung ho to find a part time job at first, but now I am concentrating on my health and family. It is such a luxury to not have to do anything if I'm having on off day.

Astra7, are you working, and how do you deal with stress?

Astra7 profile image
Astra7 in reply toLionore

I work part time at a pretty casual office with plenty of flexibility. Generally it's pretty good.

My home life is more stressful but I now just let it all go and try to let it all wash over me.

I also make sure I don't do too much on any day and I don't stay out past about 9.30!

Niludi profile image
Niludi in reply toAstra7

Hi astra7

I was like that one time a perfectionist house proud etc,although I had husband I have brought up 3 children (all adults now) by myself working home cooking cleaning etc very stressful but I used to do yoga gym all that and I M very spiritual and that helped a lot.I was diagnosed with breast cancer in April 2011 with the treatment my house was neglected and it was very stressful and hard that everything was everywhere the kids helped but not to my standards then gradually started to let go but it took me a long time so what I am saying chill enjoy your job while you can just concentrate for u have young children put them first or not come home put your feet up have a cup of tea nd a nap.believe me that works wonders then when you see the full kitchen sink laundry to put away you will think oh it's nothing and you know why because you had a rest it's only because when you are tired everything seems like an effort . that's what I do now but I M alone so it's easy.take your time not the of the world because if u are not stressed everyone will be too and u will feel much happier.when we are stressed we stress others too.try let go u r important things will get done.look after yourself as my granny always told me 'you have to look after yourself because nobody else will'

I hope this has helped niludi

Niludi profile image
Niludi in reply toLionore

Hi astray

I M working but I have been off sick for the past few months as my mobility is affected by pd.I wrk part time 3_4 days a week but since I have been home I am thinking exactly like you maybe pd is a blessing in disguise and I am thinking of taking early retirement and think of doing things I really wanted to do eg concentrate on my health and start doing all my spiritual activities again.and maybe travel too.thank you astray for helping ne see the positive side of pd and besides if it wasn't for pd I wouldn't be making lots of friends.

Thank you again hiludi

Niludi profile image
Niludi in reply toLionore

Sorry lionore

I sent reply to u on the wrong name astray.my apologies

Niludi

Bailey_Texas profile image
Bailey_Texas

What does S/L stand for

Why delay any med i know of no good reason to do so.

Lionore profile image
Lionore in reply toBailey_Texas

I met Sinemet or C/L. IMy symptoms are mild.

Bailey_Texas profile image
Bailey_Texas in reply toLionore

When it comes time that you need the meds take them they can do wonders for you.

park_bear profile image
park_bear in reply toLionore

There is no good reason anymore to delay the C/L. A recent study of patients in Africa showed prior usage of C/L had nothing to do with developing dyskinesia. As long as there are enough neurons left producing dopamine, the body can still self regulate dopamine concentration. When these go, self regulation is no longer possible and dyskinesia then becomes a problem.

ryanJames1 profile image
ryanJames1

Hi

Welcome I am 61 with similar symptoms still active taking Mucuna

DEAT profile image
DEAT

Bailey and Park Bear i have just started taking madopar 50mg/12.5 at the recommendation of my neurologist. (Dx june 2015).

He started me off on 2 tablets a day, working up to 9 tablets over a few weeks. currently at 6 tablets a day 2-7am 2 -12noon and 2- 5pm.

No side effects at all and feeling good. Starting to get my sense of smell back - wonderful. Left arm working well again, movements much quicker and more.

The neurologist gave me all the information to make an informed decision. So far i feel starting madopar was right for me.

One thing i heard a doctor say was "you can't outrun PD, take the medication and start living your life well"

Aleagles profile image
Aleagles

Similar to you must avoid stress. Still at work and started on sinamit 18 months ago and made me much better. Also need to take citalopram 20 mg for anxiety. All good apart from tremor which worsens in off time. Best.

nourilo profile image
nourilo in reply toAleagles

Did you notice any gain weight or headaches after taking citalopram for awhile? Thanks!

Aleagles profile image
Aleagles in reply toAleagles

Had lost weight from anxiety but regained it a bit after starting citalopram no headaches to report. Have heard that some folks can gain weight on starting that med. for me it works and I was too skinny anyways !!! Best

Harleybob08 profile image
Harleybob08

Hi Lionore, pleased to meet you. My symptoms were very similar to yourself. Quite a life changer. I've just retired as well.

I live in the North of Scotland with one of my two children and my wife of 42yrs.

I am on an amino acid protocol, which is working a treat.

Live life as you find it and don't stress. :-)

Astra7 profile image
Astra7 in reply toHarleybob08

What is an amino acid protocol? Sounds interesting.

Harleybob08 profile image
Harleybob08 in reply toAstra7

Hi Astra

Amino Acids

Harleybob08 profile image
Harleybob08 in reply toAstra7

Hi Astra

Please excuse reply below, I think my computer had a wobbly. Amino Acids are naturally occurring elements within the body. Consequently, they do no harm if used in natural amounts.

A decade ago a Dr. Marty Hinz started work on a protocol for Parkinsons based on aminos.

This is a copy c 2014

ncbi.nlm.nih.gov/pmc/articl...

I found a doctor who walked me through it, and it seems to work.

God Bless

Lionore profile image
Lionore in reply toHarleybob08

Thanks Harleybob08.

Lionore profile image
Lionore in reply toHarleybob08

Hi Harleybob,

I recently started drinking golden milk before bed. It is turmeric and black pepper dissolved in almond milk with a little cinnamon and a bit of coconut oil. Tastes like cream soup, yum! You can also use regular milk. I am sleeping through the night for the first time in months!,

Lionore profile image
Lionore

Thanks all for your suggestions and welcome. I see my neuro on 11/8 (Elevtion Day here, talk about stress!) and I will be open to taking additional medications for he recommends strongly. I have always believed that less is better and since my symptoms are mild and on my non dominant side I could hold off. The neuro prescribed Azelect for its neuroprotective properties.

Opt8 profile image
Opt8 in reply toLionore

Hello, I have azilect but have not taken it. How long have you taken it and how does it help you. I'm suffering with rigidity and been taking carbo/levo which either needs to be increased or I try azilect. I am confused. Pd seems to be a trial and error this illnesse for both the patient to and doctors.

llwwd profile image
llwwd

Hi Lionore, welcome. This is a very informative. positive and friendly site. I'm sure you'll love it as much as I do. I'm 61 diagnosed with PD 7 years ago. Nice to meet you.

Hugs, Sherry

Niludi profile image
Niludi

Hi Lindores

I am exactly like you but on the right side l am pleased for you that at least you have a supportive partner nd family.Unlike my self I live alone.but I try to keep on going.my Worstt nightmare is the tremor.so embarrassing ,

Anyway thnks u niludi

JohnPepper profile image
JohnPepper

Hi Lionore. I'm pleased to hear that you are not hooked on medication. Even though you often feel that you lack energy, don't give in to that feeling, it is not necessarily true.

I have overcome most of my Pd symptoms by embarking on a fast walking program back in 1994. I still do the fast walking at the age of 82 and have not taken any Pd medication since 2002.

If you would like to learn more about what I have achieved then visit my website - reverseparkinsons.net and write to me. I do not charge for what I do and everything I advise you to do does not cost anything.

Lionore profile image
Lionore

Thanks, John! I am upping my exercise and working hard on creating a healthy lifestyle for myself. I will check out your website.

Cbgs profile image
Cbgs

Afternoon siestas r good for u

I've found melatonin helps me sleep thru the night

Best wishes

C!

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