Parkinson's Movement
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New here Hi!

Hi I'm a stay home mom age 51 who was diagnosed with PD this past year although I've had symptoms for quite some time. I have 7 kids ages 8 to 22 that all live at home. It's been difficult but I hope to learn more about how I can help myself and I am open to suggestions . I've been told exercise can help so that's something I need to work on. Biking or walking? Probably both are good but would like to hear what has helped others. Does anyone know if diet changes help too? I have to admit I have felt very alone in all this not knowing anyone else who has it as well as not going out as much. Thanks for taking the time to read this,

Connie D

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Hi Connie and welcome. You're going to get a lot of replies so I'll try to be succinct. I was diagnosed at the age of 55 - I'm 58 now - and like you, knew something was wrong for a while before that. I live in the U.K.

Finding this site was the best thing I ever did. My neurologist and PD nurses have never talked to me about exercise, nutrition, supplements - these are incredibly important, especially exercise. And the earlier in your diagnosis, the better. My understanding (and here's where you'll get a lot of replies) is that fast, intense exercise is best. I do cycling (stationery bike) and rowing, but I also do a programme called PD warrior which is brilliant: pdwarrior.com but I think in the states they have stuff like Rock Steady Boxing.

I use supplements - I take N-Acetyl cysteine, N-acetyl l-carnite, Alpha lipoid acid and Inosine which is showing good results in medical trials. There's lots of information on here on supplements - use the search engine on the site. I also get very stiff and I use emergen c on the advice of someone on here and it's been a game changer.

Medication? Again, people have different experiences. I try to keep mine as low as possible but I do need something now- I take aziclet and 6mg ropinirole which is a dopamine agonist. Some people have had side effects from ropinirole but for me it's been good. In my first year I used a natural product called Zandopa with good results but now I do need something more. I still use zandopa to 'top up' on long days.

I'm still working, driving, doing ok. For me, the name of the game is to try and slow this thing down and to stay as mobile as I can. Exercise is absolutely key. You'll get a lot of advice/views/information here. Do your research and pick what works for you.

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Thank you so much for your reply I feel I have much to learn so thanks for sharing! I may ask you again about some of the supplements you find helpful if that's ok, my youngest being 8 I'd like to be doing better than I am so I can be more active and need to begin exercising which I am realizing more and more is sounding important! I am surprised that my Dr never shared any other info that would be helpful like exercise, supplements etc. and for a long time I was afraid to read too much on the internet just a bit overwhelmed by it all. I'm beginning to realize I need to take more control and hopefully making some changes like exercise I'll start to feel better too!

Thanks again for your kind response,

Connie

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Ask away. My suggestion would be to have a look round the site, do some research then start narrowing it down. I was in exactly the same position - now I am much better informed! Like I said, exercise is the absolute key especially early on.

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I will definitely do the some research. I think the biggest question would be as far as supplements is it easy to figure out the dosage or is it a matter of trial and error? Just figuring out what amounts work for you? Also did it take time to decide if it helped? I'm interested in the emergen-c do you buy it online and what dose do you take? Does it help with the stiffness?? Thanks sorry so many questions but it's nice to chat with someone who knows the struggles.

Thanks

Connie

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Where are you located, Connie? My hubby relies on Emergen C, and buys it at Walmart. It is powdered and comes in small packets. Pour a packet into a glass of water and consume. It is orange, tangerine, raspberry etc. flavored, so not unpleasant to take at all. He can tell a difference when taking it. It is full of B vitamins, which help the nervous system, thus good for PWP.

He has recently started consuming coconut oil and also niacin. Both are reported to be helpful for PD. Has taken these only a week, so not enough time to note changes.

His prescription meds are carbidopa/levodopa and a neupro patch for stiffness. And yes, we find that exercise is the key!

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Thank you so much! I live in NY state and Walmart is very close by, so that's so helpful. I will get some today!! Does he take more than 1 packet at a time? Thanks again!!

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Connie, he uses one packet each morning. It was a couple of months before he began to notice feeling better, but saw a definite improvement. In fact, when he went to his Neurologist and they did the regular screening, his score had improved 7 points! The Emergen C was the only change he had made. Give it a try!

Ann

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Thanks Ann I definitely will!!

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Hi Connie

My husband was diagnosed in November he is 46

It's all been quite a shock

Can you let me know about these supplements you take

And how and where I would get them

I also live in the U.K.

Kent area

My husband does boxing 3 times a week we also swim

He's taking coconut oil

As well as medication

Sinenet plus

Which doesn't really help

Look forward to hearing from you

Candy

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Candy, I assume you're addressing me, not Connie. I would encourage you to do your own research and make a decision based on what is right for your own set of circumstances - I am by no means an expert and anything I know I picked up on this forum from others more knowledgeable than I am. However, you can use the search engine box on the site. Put in N-acetyl l-carnite, and Alpha lipoid acid to start you off. Some people find Q10 has helped. Then use google too. You'll find information on medical trials using the supplements and you will read about dosage there. I also use Inosine which is showing good results in a Michael j fox trial but you need to check for downsides - like Inosine can cause kidney stones (I've been fine). I take 12-1600 NAC a day. It is trial and error and it does take a while. You get some from normal health food stores like Holland and Barrett and some, like Inosine, I buy over the Internet. But I think it's important to say that there's not a definitive list and you must research what's best for you. There's lots of info out there.

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Hi Candy!

I live in the US and stumbled upon this community quite by accident but I am so grateful that I did! It sounds like you are doing it right by exercising something that I need to get started on! As for my meds I take Rytary which is newer to the market here at least and is like Sinemet but is suppose to be longer acting and I take pramipexole in a smaller dose with it 3 times a day. I'm trying to cut back a little with the help of my neurologist in hopes of helping the dyskinesia I get as a side effect from these medications. It's been hard to figure out the best dosage, and I always have off periods during the day in between doses where I'm waiting for the next dose to kick in. That's one of the things I find challenging about all this. As far as supplements other than a multivitamin Ive tried Cbd oil. It's hard to say if it's helped but it's suppose to have neuroprotective properties and they are doing some studies with PD patients. I buy it online but it's expensive so I don't know if I'll always be able to buy it. At the moment that's all I take but when I have a moment I am going to go through all the messages I received and some did mention supplements that they found helpful that I would like to try and I'd be happy to share what I've learned with you if you would like! It does come as quite a shock I completely understand and it affects the whole family, your husband is fortunate to have such a supportive spouse like you! Let me know if you would like me to share all the information people have been so kind to give me here! Take Care!!

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Hi there

I will try to look into all

It's such a mind field

I feel a little out of my depth

But I love this site and will with all of your help

Look into everything

If there is someone in the U.K. Who could get untouch with a call would be great

I'm so positive and so able

But I need directions !!!

Thank you so much to you all👍

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If Sinemet is not helping then you need to go back to your neurologist. A positive response to Sinemet is generally considered to be one of a range of criteria for Parkinson's Disease.

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Hi Joy,

Yes the Sinemet helped a lot the Dr thought I should try Rytary because it is longer acting but the same medication. I'm new to this site, which has been so educational!

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Whats funny is my Neuro did tell me what to eat, lots of red meat, take up smoking, basically everything that's bad for you. It would seem to be that all those things that are bad for you are neuroprotective.

I am starting to wonder if she has my best interest at heart?

HAL

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Yes that would be concerning to me. Especially the smoking someone may end up with more problems! I've been to 3 neurologists because of the length of time to get a diagnosis. I think I've learned so much more over one weekend from all the great advice here! Although the Drs are well meaning I think at least in my experience they are best versed on the medications and the rest like supplements, exercise, and diet you really need to research on your own or find out here what's helping others who have had success and learn from them.

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Hi Connie. Welcome to a great group of PwP (person with PD) friends. I agree with what Stevie3 has mentioned. A few other things I thought of, you might want to have your Dr check your D3 level, in can be low in some PwP's. I see a Movement Disorder Specialist which is usually more versed in PD. I also take 3 Tbls. of Coconut oil (Nutiva) & healthy chocolate (Xocai). I also take Emergen C & Krill oil. As Stevie said Exercise is very important. I live in Indiana and do rocksteadyboxing.org. It's a non-co

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Sorry, my finger slipped & hit the reply button. RSB is a non-contact form of exercise that is only for PwP's. My diagnosis was 13 yrs ago & I've been going to RSB for 10 yrs.

Feel free to ask any questions & keep fighting.

Debbie

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Thanks Debbie!

I am grateful for the advice it has been a difficult time but I am glad to hear there are things I could be doing that could help! I've been mostly in the dark about a lot of this and it has taken a long time to be given a firm diagnosis. Is D3 vitamin D? I'll be seeing the Dr this week and could ask her about it. Thanks again I'll have to see if they have the boxing in my area that sounds fun!

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Agree with comments about specific excercise for PD, not just normal 'keep fit'. It has to be something you enjoy so you will keep doing it! Try PD Warrior (Australia), fast cycling, ballroom dancing.

Also make sure you see a Neurologist who specialises in movement disorders. There are also physios, OT's and speech therapists who speciase in PD.

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Thanks for the advice. I wonder if they have any cds for PD warrior I'll have to check online. My sister who is a nurse heard about a dance class in my area that is specific for PD patients I should give that a try possibly. I just saw a new neurologist who is a movement disorder specialist. She works closely with a neurosurgeon who does DBS on patients. There is a lot to consider and I'm not even sure I'd be a candidate for it but she did spend some time discussing and explaining it. I only know of 1 person who had the surgery and don't know him personally but was told by a friend who is friends with his sister that he said he had a new lease on life. If through exercise and other supplements I could achieve the same results that would be ideal. Surgery is scary to me but I would do it for my family if need be.

Thanks for all the advice and encouragement!

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7 KIDS !!!!!

My advise is to delegate, delegate, delegate. When I asked my son what he wanted to do for a career he said he wanted to be a stay at home dad, like me. I told him that was great because I will need someone to help me change my diapers. He decided to become a software engineer instead.

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So funny! I may have to try that one!! I wish I could say they are all so helpful but it wouldn't be the truth. I blame myself for not delegating more when they were younger. Something I'm trying to be better about with all but especially the youngest 2. I have quite a few off periods throughout the day and that can be frustrating because I have to wait for my meds to kick in so it's hard to accomplish all that I need to do some days . I appreciate the advice and you're so right that I need to get on them or assign some jobs to help out more. Here and there they do but not consistently and not without a lot of complaints. Their favorite expression when asked to do something is "I will"! Thanks for the encouragement !!

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Connie, fret not. PD is what you make of it. Believe in yourself, try to minimize stress, stay focused to fulfill whatever obligations you have and exercise as much as possible. The best exercise is one you will do. Keep doing as much as possible.

You will be fine.

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Thank you for the advice I feel less alone knowing there are others out there like myself that are still doing well. I need to get going with the exercise. I'm embarrassed to say I only tried once to go for a walk with our dog around the block but felt like my medicine had worn off by the time I got home and it was too soon to take another dose of meds. I thought maybe the exercise was to blame but clearly it helps others so I need to try again! Thanks again!!

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Connie, I am 76 diagnosed 4 years ago period I take very little medication some days I skip it however I exercise vigorously every single day. I walk 4 to 5 to 6 miles a day and do several exercises or exercise classes. Concentrate on movement since this is a movement disease. Don't let any time go by without moving. this assumes that you do not have a heart condition or some other reason that would make it dangerous for you to exercise.

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Thank you I need these kind of encouraging words more than you know! I do have mild asthma but nothing that should prevent me from an exercise priogram. I plan to get moving!! Thanks again!!

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As for exercise any form of exercise will do. It does not have to be a program for Parkinson's. It should be something you enjoy because if yiu don't enjoy it you will not do it. It should have strength, strenghting. and cardio. It should be intense and tiring. At least a hour a day. For me it is Crossfit.

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Thank you for the great advice, I don't think I understood how important exercise was in managing my symptoms. I do now! So thankful I stumbled upon this community, I can't tell you how much I appreciate the advice and kind words of encouragement!

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My husband has had PD for several years and besides seeing a good neurologist he has done physical therapy and diet. Hone to classes with others and found out what he can do. The hope is that they are discovering new ideas all the time. He goes to a gym for exercise now and walks in one of those pools that has a strong current he walks agains to help his balance. The thinkg is is to stay positive as you can. Make sure your family knows how your feeling like if you are to tirex to do something one of the older ones should be there to help you out with the younger ones. There will be times when you can't handle being around people or going out anywhere. This is quite normal. Your voice might change as your neck and throat muscles tighten. Do u take carbadopa levadopa...?? FOr your shakes. Thats the gender name. I suppose you know all that. Anyway you most of all need support and a good therapist who can help you get through. You are going to nee all the help you can get as it progresses but like I said new things are cropping up all the time. Please please get help from your dr. Make sure you have a good neurologist who deals with Parkinsons. God bless you. Make sure your husband understands too. He's your biggest ali. Cloudlover

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I was diagnosed 2 weeks ago at age 53 feel very alone as well but starting a support group of my own in my town started a Facebook page with tons of responses from friends close by sharing stories family members that have PD I use this for strength . I go to gym as much as possible and biking is said to be great . Its a journey you don t have to take alone ,don t be afraid to share with friends they will help . I am scared but I m going to make it and you will too .

Brian Harris

St Marys Ontario

All Shook Up on face book

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Thanks Brian!

That's great that you started a support group! It's a difficult diagnosis to hear and mine was undiagnosed for a few years where the neurologist wasn't positive it was PD and now as time has gone by and my symptoms worsened I finally got a firm diagnosis. I don't have facebook but my 21 year old daughter does so either I could possibly look at your sight with my daughter or make one of my own. Either way it's great your doing something positive that may truly help others and I will definitely Check it out! We live near Buffalo and my husband travels to Canada a lot for business. We are renting a cottage in Long Beach this summer. We rented the same place 2 yrs ago and really enjoyed it. I have found this journey very isolating at times, because of the dyskinesia I get as a result of my meds I don't get out as much as I used to. It's hard because it takes a toll on my family too, as much as I try to carry on as usual it's not easy and my husband I think probably just wishes things could go back to what they were. He's angry that this is happening, but I know that being angry doesn't help and try to help him realize that we can still try and have a fufilling life, different than what we expected but still good! Life takes so many twists and turns no one is guaranteed anything. Thank you for the encouragement and telling me about your new support group!

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Connie. Great counsel you are getting here from Stevie, Laglag and all. To the advice above I'd add these:

You asked about diet. I try to boost the antioxidants in my diet and keep the glutens to a bare minimum. Turmeric ends up in foods I never would've added it to 3 yrs ago.

Sleep. Our brains need the downtime to generate neurotransmitters, so getting enough sleep is vital. It's also easier said than done considering PD and some meds we take for it mess up our sleep patterns. One trick is to keep away from any computer, phone screen at night.

Physical therapy: don't know what symptoms you have, but a type of PT - Postural Restoration - helps greatly with my gait disorder and rigidity.

Exercise: Think of exercise as medicine. Just as you wouldn't miss a dose of your drugs, make the time to exercise every day. Try different kinds. Don't rely on only one. Just as the symptoms of PD vary, so too do the exercises that can help with them.

As of now there is no magic bullet to stop PD. There is, however, a magic shotgun you can assemble. You have come to a great place to find the parts that work for you. Cheers.

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Hi Motal,

Thanks for the great advice! I appreciate all the suggestions but you are so right about sleep ! You were speaking directly to a problem I have which is when I wake up I immediately start looking at my phone, I tell myself it will help me fall asleep and not start thinking of all the things going on in my life. After seeing your message last night when I woke up I said to myself no and I did fall back to sleep and actually overslept! But it was a good thing I needed it. I love how you say there is no magic bullet but a magic shotgun you can assemble!

Thank you so much to you and everyone who reached out to me ..you've restored my hope and I feel for the first time that I can help myself!!! Thanks everyone!!

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Connie.

There's an interesting study out of Harvard on those blue rays and how thy keep your brain from firing the melatonin you need to sleep. (talk about a vicious cycle...)

Rather than take up space being repetitious about stuff i posted before, I can steer you toward all this in a thread from a few months ago. healthunlocked.com/parkinso... (if the link doesn't work, try searching Helpful Suggestions For Insomnia)

Sleep well....

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Thanks for the great advice!!

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If you're having trouble turning over when in bed, try silk/satin pj's or satin sheets (not both or you'll slide out). Also try to find a really good pillow. I found a Bamboo pillow about 6 mths. ago that I really like.

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Exhibit A: "(not both or you'll slide out)" of the invaluable advice here at HU. Thanks for sharing the life lesson.....

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Very good advice Motal!

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Hi ConnieD. Here is my brief story:

My first symptom started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with Pd in 1992, when my symptoms had slowly got worse and worse until I started to shuffle and the neurologist was able diagnose the Pd.

Because of severe back problems, I had been going to the gym every day, six days of the week, until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I decided to stop going to the gym.

Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared. By 2002 I was able to come off all my Pd medication, and have continued to be medication-free ever since. I am 82 years old now and live a 'normal' life, full of purpose!

You may think that you will not be able to do Fast Walking, but I have found that not to be true with many other patients. I go all over the world showing people how to walk properly, with only three exceptions among hundreds of seriously affected patients. Above all else, walking costs nothing and everybody's health improves, when they do fast walking, and if you put everything into it, then that may include yours.

View my website - reverseparkinsons.net and contact me from there

. I do not charge anything for what I do. It is my way of saying thank you for my good health.

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Connie - hi! I don't have Parkinson's but I'm a Personal Trainer who is Certified in Delay the Disease - an evidence-based Parkinson's exercise program. Exercise is the "newest drug for Parkinson's." Please find a class or a trainer in your area. I've seen it Delay symptoms, increase independence etc. You absolutely can take power back from this disease.

Good luck!

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Hi Connie, suggestions what helped me. be positive, exercise. But look for exercise you can enjoy. Meditation, get support if you can. Walks. Good luck. Who knows what's around the corner.

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Thank you Angelo!

You don't know how much I needed that today!! I have been exercising but I wish I had more stamina so it would be the most beneficial, I have been able to increase my time gradually so it's improving. Just not as fast as I would like. I like your positive outlook I think being hopeful is so important too. I do think I should consider meditating so thanks for mentioning that. Stress isn't good I know and sometimes with 7 kids all living at home it does get stressful, meditation might really help! It probably would help anxiety as well, I'm working on that too I have always been a worrier even though it isn't helpful. Thanks again!

Connie

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Hi Connie, I’m new too & overwhelmed I’m 53 and diagnosed one month ago. I live in Louisiana about 30 miles North of New Orleans...I have had a hard time finding a doctor...it took me 4 months to get into see a movement disorder/Parkinson’s specialist. She diagnosed me on my first visit. I am not doubting my diagnosis...just need a better rapport with my doctor. She did tell me to take thiamine. I too am thankful that I found this site; I’m learning so much and will start Emergen C...I’m not feeling so alone. Good luck to you!!!

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Hi Danasr! It is an overwhelming diagnosis but you definitely have come to the right place. I stumbled upon this website over a year ago and have learned more here than from any of my doctors. I should probably update my profile because although I was diagnosed A couple years ago ,I was misdiagnosed with dopamine responsive dystonia before that. So technically I’ve had symptoms for probably 6 1/2 years and I’ve been on medication for about four years (sinemet is the same treatment) There’s a lot of great information here from exercise ,diet , to supplements. And can be a little confusing in fact I have a drawer full of supplements because of it! Everyone on here is been more than helpful you just have to decide what’s best for you. Being the same age (I turn 53 in October) is definitely on the younger side of this most people seem to be 60s or older but when you read about others in their 30s and 40s I’m Thankful didn’t happen sooner. My hope has been if possible to avoid DBS. I haven’t ruled it out completely but from things I’ve read it seems although it can initially seem super helpful for a few years or more it can also create worse problems later on. You’re lucky to have found a specialist who is open minded about supplements, how much thiamine have they recommended ? Do you have supportive family and friends?

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