Shaking from the inside out and getting worse

Shaking from the inside out and getting worse

My dad is 71 and was diagnosed with Parkinson's Disease around 10 years ago. The last few weeks he has taken a real downward turn and feels just awful. His left side is shaking much worse and he says his whole insides feel trembly. His legs are restless and he cannot be still. He has so much trouble standing. He was a very fit and hard- working person before PD, but just needs some encouragement right now. They do not use computers, so I try to speak for him and learn about natural remedies for him online. This community, which I finally joined today, has been a huge encouragement to me and full of ideas! Thank you all!!!

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  • Please do not limit your search to only natural remedies Rx meds work well for most people with out very many side affects. Try to get him to do as much exercise as he can do plus a little more. it will greatly improve him.

    If he was fit before PD he can regain that level of fitness again

    I am 62 and 10 years with PD and show little or no signs of PD. i take RX meds and work out 5 or 6 days a week.Have lost 30 pounds in the last year.

    I can

    run 2 miles

    Back squat 285 pounds

    dead lift 395 pounds

    Jump rope

    do 50 sit ups with out stopping

    25 push ups

    bench press 200 pounds


  • Thank you Bailey! My dad takes Sinemet and he used to take Azilect, but it seemed to not help. NOW, if I'm not mistaken, he is going back on it, since his neurologist said it may be helping slow progression even if he doesn't feel it. I will ask him if he's back on Azilect too. I have encouraged him to walk. He is a gardener and works hard at it, up until few weeks ago, he's not felt like doing anything. Will continue to encourage exercise. HERE'S A CATCH: HIS DR. SAYS HE HAS THE TYPE PARKINSON'S THAT DOESN'T RESPOND TO ANY OF THE MEDS! And it kinda seems true.....

    He temporarily got better after introducing the MUCUNA PRURIENS. I am ordering a different brand today for him, from India, called KAPIKACHHU (spelling?) It is to be mixed with warm water, I believe and is a raw, pure form. I've been reading about several other supplements and will order a couple after he starts the Kapikachhu. Thinking of getting MCBN, a form of B-12 (methylcobalamin) next, so maybe he can have more energy, as well as THEANINE for sleep and relaxation when he needs it most. He cannot seem to stay still and his legs are restless. What do you think?

  • If he gets really desperate for relief, my husband has a glass of wine; his hands, brain and body relax and he can write.

  • Thanks Rhyspeace12. I will let them know!

  • My husband is 76 and has had PD for about 5 years. The alcohol helps him, especially when he needs to sign documents. Alcohol is one way doctors diagnose benign tremors from PD.; in that case, if the tremors stop, they figure it isn't PD, but in my husbands case, it helps a lot with the PD.

  • my partner feels sick if he has alcohol,moving around helps him we play tennis often sometimes he cant move arms or legs but usually he comes through and enjoys it immensly he has had pd for 10 yrs he is 59 yrs old and has injections when he gets really stuck of appo go.

  • I was diagnosed three years ago. I am 68 years old. There are no natural remedies but I am still looking, Currently I am on my third week of consuming boron. No effect but they say give it time. I want you to encourage your dad to eat his favorite foods. Permit him to enjoy life.

  • Hi. What Bailey says is right - it may be time to look at the treatment options. But if you use the search facility on this site, look for Mucuna Puriens and Zandopa, they are both 'natural' remedies that I personally fnd effective. I also take aziclet. However, I am only in my 50's and was diagnosed much more recently than your Dad. But take your time and look around this site - it has a great deal of very helpful information. What works for one person doesn't necessarily work for another.

  • Stevie3, isn't Mucuna Pruriens and Zandopa basically the same, except that Zandopa is considered an "extract of M.P.", having ONLY the very thing that replaces Dopamine? I have been trying to solve this perplexing issue! :)

  • I think so! I use Zandopa powder and the Mucuna Puriens capsules. Speaking only from my personal experience I find the Zandopa powder more effective. I take it in the morning with water and occasionally later in the day if I'm having a particularly strenuous time or am wobbly. I carry the capsules round with me but don't use them as much. It's experimentation.

  • Sounds wise about the experimentation stevie3! I like the idea of having BOTH powder AND capsules, since it's hard to do liquid mix when out and about.

  • What dosage of each have you found to be most effective? I've tried both but haven't noticed much impact on my symptoms. Maybe I need to give them more time?

  • I experimented. I use the scoop and usually have two or even three in a glass of water in the morning. It makes me a little nauseuous so I have a bottle of water and glass and spoon by my bed and have it when I wake up 20 minutes later I eat something, then I'm out the door! Sometimes if I have a long day at work, I have some before I leave. I keep a tub in my desk.

    I don't recommend my dosage to anyone - it's what works for me and I think you need to experiment cautiously. I've not had any ill effects with it. Also, I'm in relatively early stages of PD. I'm not sure how effective it is once you get further down the track.

  • Like you, I'm in the early stages and have the luxury of being able to experiment. I appreciate your response. Thanks.

  • He is taking M.P. but I am ordering a more raw and pure form of it to see if it will jumpstart him again and get him more dopamine.

  • Has he been prescribed anything? I've always said that while Zandopa works for me, that's great, but as the disease progresses, I'm absolutely going to look at the pharmaceutical options. It's about quality of life.

  • Sorry. You answered that in your response to Bailey

  • Yes, Stevie3. When first diagnosed, he was given Sinemet and Azilect. Then Dr. backed him off Azilect, I believe due to bad side effects. And the fact he needed an antidepressant boost adn couldn't take it with the Azilect. If I'm not mistaken though, the Dr. may have recently put him BACK ON AZILECT. But I think he needs the antidepressant worse, personally, since the Azilect doesn't help it seems and gives him terrible nightmares and even some hallucinations, at least unless it's a very low dosage. Dr. says HIS form of PD just doesn't respond to meds. He was told this perhaps a year ago. We weren't surprised at the statement in a way, but in another way, it is VERY DISCOURAGING NEWS TO BE TOLD! I thot there would be more prescription meds out there to help, but replacing dopamine is mainly what's done I guess.

  • I love your comment about enjoying life! I have never been forceful, since my mom is there with him daily, although I do live close. But since they do NOT do computers AT ALL, I believe I can help him by reading and listening and learning online. He has had the absolute best attitude we could ever expect anyone with PD to have! These last few weeks have been extremely "shocking" to him, mom, my brother and me! So I figure, now more than ever, is a good time to start adding some things to relieve any symptoms we can and just make him feel better and enjoy life. Again, thanks for your input, and I hope to always "permit" every pleasure for this sweet man!

  • Has he taken (Mirapex) and ropinirole (Requip) they work well with Sinemet .

    They can have some side affects that you and your mom must be aware of.

    Compulsive things like gambling and sex.

    But they can help a lot.


  • I will ask him Bailey_of_Texas; not sure if has taken Mirapex or Requip. Thank you! Those side affects would terrify the daylights outa my mom and him! As PD progresses, they are getting more open-minded though.

  • Hi, I currently take Mirapex and Sinemet and they work pretty well together. so glad I don't have the (gambling) compulsive side effect 😊

  • Annie, did you ever take just Sinemet? If so, what kinds of positive changes did you notice when Mirapex was added? Not sure what the MIrapex is for. thanks much!

  • I actually started on a low dose of Mirapex and it was for stiffness and tremor. It was gradually increased over the past 5 years and I currently take 1.5 mg along with Sinemet. The mirapex works wonders for me, it keeps the tremors at bay . The Sinemet was added because of increased stiffness in my right arm.

  • Mirapex helped your tremors then...that's good to hear. And you said you do NOT experience compulsive habits as a side effect?


  • Hello Birdworld, sorry to hear about your side effects of mirapex ? What are your side effects?

  • Google Mirapex......check out for yourself the numerous side effects people have experienced ..... Lots of bad experiences, including major addictions.

    My side effects started with swollen legs, about 6 months after starting with it, followed by excessive weight gain (45 lbs in 18 mths). My legs are twice the size they were before. Also traced down a trembling neck and jaw effect, indicated by a doc who found a number of her patients had developed the same thing after being on Mirapex for 6-12 months. It is not conclusive but the effects may be irreversible.

    I am now down to 1/4 dose at night and hoping to be off very soon.....started April 2013 and it did help the RLS but with a heavy price to pay (and I don't mean $$).

    My neurologist is working with my dosage of Sinemet at night to "replace" the Mirapex.

    I do know of one person (male) who has had no effects after taking a higher dose than me for a number of years. That knowledge helped me to decide to take it, but in hindsight I wish I had looked for something else. I tried just about every herbal and over the counter remedy before giving in to drugs for RLS.....prior to diagnosis of PD, which came after a car accident.

  • So sorry to hear this . I hope you find something that works for you. I am fortunate to not have any side effects, I've been on it for 5 years.

  • Birdworld, prayed you'd come off the med easily and the side effects would go away! Thank you for sharing this info too.

  • From the Manufacturers information:

    The AZILECT® prescribing information contains a warning regarding concomitant use with antidepressants, they are not contraindicated. It's important for patients to know that AZILECT can be prescribed with antidepressants with proper dosing and careful monitoring.

    There is one antidepressant considered to be definitely safe with Azilect but unfortunately I cant track down the name at the moment.

    The recommended dose of Azilect is less than originally used which may make a difference to how your father reacts to it now. The Azilect helps your body to make the best use of whatever dopamine is circulating and has a smoothing out effect. The neuroprotective angle is not yet proven.

  • Okay Paddyfields...My dad's next Dr. appt is Feb 4, so this is a good question to ask about using BOTH Azilect AND an antidepressant.

  • Magnesium helped my internal tremors.

  • I was dx 11 years ago. To date, the only thing that arrests the "inside" tremors (feels like my cell phone vibrating) for any length of time at a stretch is acupuncture. I've done acupuncture and helped start a Yoga/Pilates group for PD'ers and friends for over ten years.

  • THAT I fear I will have a hard time convincing my dad to do, but I am interested! Where do you get acupuncture done? I'd like to find him a Yoga/Exercise group for PwPD, if he'll go. I wonder if an old fashioned guy like himself might do some WII Fit stuff, Yoga, etc in the comfort of home....thot about getting him set up with one. :) Thanks for info and God bless you!

  • Hello Bitsy, magnesium helps? I'm willing to give that a try. How much do you take ?

  • Hi Annie,

    It was trial and error. I was taking up to 960mg a day but have settled on 640mg a day which is 2 X 2 160mg tablets a day. It has stopped my internal tremors and my neurologist says he is happy for me to take it. I hope it works for you too. I take Life Extension magnesium citrate but I am going to try the magnesium L threonate which apparently crosses the blood brain barrier. All the best. Cheers Bitsy xo

  • Thanks for mentioning amount and types of Magnesium, Bitsy!

  • How did you find out about the magnesium helping?

  • Hi Annie,

    My sister takes it for restless leg syndrome and I decided to see if it could make a difference for me and it did. Judging by some of the replies it works differently for everyone.

    Cheers xo

  • Wonderful news, Bitsy!!! I'm so happy it helped you out. And it is sooo easy to come by and pay for! I know Magnesium is good for anxiety and hormonal anxiety, so shouldn't be surprised. DO YOU JUST TAKE ONE PILL OF MAGNESIUM A DAY? Thanks!

  • I see you answered above.

  • I have been on azilect and mirapex since diagnosed a year ago. The dose of mirapex has been gradually increased over the year. Have no side effects thus far. My doc and I are aware of and monitor for side effects. Everyone reacts differently to meds. It's all trial and error (a crap shoot)! Don't avoid a drug just because someone else had a problem with it.

  • Hello Sane 1 , good advice . Never know until you try.

  • I have been struggling with well-meaning internists for years over my elevated "bad cholesterol-LDL-level). They keep trying strategies and the thing your dad is experiencing sounded like what happened to me whenever I accepted a doctor's treatment plan. So, before embarking on herbals, have you investigated whether there has been an effort to address your dad's cholesterol level. Statin drugs and even niacin are suspected of exacerbating PD. I've experienced relief from the "inside" tremors by simply withdrawing and discontinuing cholesterol treatments. I know in recent years there has been research evidence that cholesterol is neuro-protective. I am inclined to agree with that based on my personal experience. So, is your dad on a cholesterol management treatment plan? If so I highly recommend discontinuing for at least 4 days to see if the "inside" tremor goes away, then if it does tell the md to piss off. I hope my suspicion is correct for your dad's sake.

  • Hello Buzz, those statin drugs are terrible. I had so much pain while taking, I wouldn't recommend them to anyone.c

  • Buzz, I will def ask my dad to make sure, but I don't think he is on anything for cholesterol. So glad you were helped by discontinuing! And it does seem so important to use your neuro AND your own experimentation.

  • Love your artwork! I'm trying Magnesium for internal tremors & only taken for 2 days. Was churning inside so bad was getting naseau!! Started I-MAG T which is high grade supplements that has brain stimulant also. WOWZA can't believe inside buzzing is diminishing! ! Learned about Magnesium on this site for IT's. Maybe too soon truly know if it will work BUT so far RELIEF in sight!

    Yes read on here about types Mag that work. I got magnesium theonite they say don't get oxide. If you want Pharma link in TX bought this from let me know. Doesn't have horrible additives! YOUR DAD & MOM ARE BLESSED TO HAVE YOU IN THEIR CORNER.

  • Thanks, BeezyB! I-MAG T....Got it! :) Magnesium Theonite. Did you get it online then? Sure, I will take the link! You taking multiple a day Beezy?

  • I am 69 --been diagnosed with P D for over 13 yrs and suffered some of the attendant problems as your father. My current litany of P D problems include balance , gait, sleep ,constipation and posture (a few other minor ones). I found azilect very beneficial to me--within 2 hours of taking the first dose I was walking better and felt much better too. It does not work as well now (taken it for 7 years) but it proved most beneficial to me. I started daily exercise about 7 years ago and have found it to be of great benefit as well. Specifically--I took the BIG and LOUD programs and would recommend them highly. I also purchased a Theracycle---a bit pricy---for daily use and it too has been well worth it. It is simple to set up, practically no maintenance (a retired judge like me can handle it) and offers several advantages over other exercise modalities and machines. The company that makes the Theracycle(other than being run by yankees) is first rate, eager to please, and will stand by its product. Try it out-- I predict you will find it very helpful.

    I occasionally experiment with non-traditional treatments and therapies too---acupuncture ,CO Q10 and have just begun taking coconut oil---keep your fingers crossed for me.

    It is easy to become depressed as we battle this insidious and invidious plague but REMEMBER----we are in this together.

    GOOD LUCK !!!!!!!!!!!


  • Much thanks to DaJudge! Will def look into the Theracycle. Not heard of BIG and LOUD...what is it? I pray your new remedies help you out! MY DAD'S MAIN PROBLEM SEEMS TO BE THAT "HIS TYPE PARKINSON'S DOES NOT RESPOND WELL TO ANY OF THE PD MEDICATIONS". That is a quote from his neurologist (2nd Dr.). And it seems kinda accurate, because most people experience some kind of great relief when they first start dopamine replacement...which Dad did not. His just kept getting worse, regardless! When we got him some Mucuna Pruriens, it helped him some! Yayyyy! But now the downward turn. Going to switch to a raw and pure form of M.P. and some good B-12 stuff for energy and some Theanine for sleeping better. I think that's the plan so far. I am listening to you all....thank you soooo much!

  • First I'd like to say I am soooo happy that you are helping your Dad!!! My kids do not help theirs very much with his PD. He was also a very strong and active man before his illness. He was in his early 50's when it started and he is now 65. It has been a very loooooong illness with it's ups and downs. He has gotten a D.B.S. 3 years ago and it stopped his tremors. They (the doctors) tell us it also stopped his progression of the other symptoms. Who really knows? Anyway, he does have balance issues, restless leg syndrome at night. It drives him and me nuts!!! Nothing we have tried helps that. Anyway, you may want to look into the D.B.S. for your dad. I read that others really got lots of help from it. Also anxiety is an BIG issue with my husband. He does not want, "people to see him weak" as he says it. He does not talk as loud anymore as he used to and it upsets him. He wants me to talk now for him. He hates to be alone. He always wants me to go anywhere with him. He used to not worry about going anywhere alone.

    The only advice I can give a caregiver or family member of a person with PD is patience, love and always believe what they say they feel or see. The symptoms of P.D. are soooo many and soooo strange. Check them out with their doctor! Don't say it's nothing or it's all in your mind! That is the worst thing you could do!!

    May Christ bless you and your Dad with comfort and strength. I love your photo!!!! :)

  • Imbanni, what a blessing it was to my heart to hear from you! To hear encouraging words and to hear of your experience with your husband and to get some advice. I know my dad has had some hallucinations seeing people and large spiders walking around and I did believe him. The mind is complicated! And he has on occasion seen doors running parallel to floor instead of perpendicular...again I can believe that. He has never lied once in his life that I know of. I am just very thankful that he loves and trusts us enough to share these hard things, especially considering Dad's always been a quite and reserved man. He is a Christian and everyone knows it...a gentle giant!

  • Praise Our Lord for your father's love in Christ!!! He above all others will take care of him!!! My husband's faith has grown much more in all his/our trials with this beast, P.D.

    I am soooo thankful to our Lord that He blessed my husband with this faith and the evil one has not been able to take hold of him!

    I pray for you and your family to stay in our Lord's embrace!

  • Just wondering if his nutrition levels are OK? I had undiagnosed coeliac disease for many years and had the trembly feeling inside and restless legs. I also slept badly and woke up feeling tired. It was caused by malnutrition (because coeliac is an auto-immune disease which damages the gut causing poor absorption of food). I was completely cured when I'd been on a gluten free diet for a while and was no longer wildly anaemic and lacking in minerals. Vitamin D is also crucial. Does he take plenty of good supplements? I suspect that the bodies of some PWP are not very efficient at assimilating food. Also, food doesn't have much goodness to start off with when it is picked and put in cold storage for months. I'd start off with strong mineral supplement and vitamin D if he isn't taking anything at present. Good luck

  • Thanks Hil101! I am going to get a good mineral supplement and Vit.D for Dad, along with a good B vitamin and I-Mag T. I am not sure about Celiac Disease, but imagine PD makes it harder for body to get all nutrients it could. So, this has been very helpful!

  • That sounds like a good plan. Since posting my last response, we've discovered which is a website by a man who, when diagnosed, went flat out on researching all the things that might help. He lists supplements etc he used to vastly improve his health and get off medication. It's a superb website and it is not selling anything or charging money. Do take a look. Good luck!

  • Easy blood test for Vitamin D - suggest do it first & if he needs it buy only D3.

    Liquid is best for absorption. Store stuff made my body ache horribly & gave me

    foul smelling breathe... Get the pure form here with your I-Mag-T > Hill Country Apothecary A friend who is a Nutritionalist told me about this & she is like one of the head gurus for Google's nutrition team!

  • I've heard other people with PD talk about internal tremors. I'm not sure exactly what they're feeling, but I can at times have an internal sensation that could be called internal tremors. However, I describe it more as a very strong pulsating feeling from inside my upper torso. And when I have it, I feel very jittery. I have definitely connected it to lying down when there is food in my stomach. I used to eat a light snack just before going to bed because I also have hypoglycemia. Then, I'd get into bed and start feeling those blasted pulsations. They were so strong I could even hear them and they'd keep me from going to sleep. Now, I make sure I don't eat anything within two hours of lying down, and that has stopped the pulsations.

    I don't know if this has anything to do with your dad's situation, but it's worth looking into.

  • HeartSong, Dad definitely won't eat after dinner, which is early at their house. He and Mom tend to get heartburn. I'm glad you mentioned this though, for someone reading it can be helped by it!

  • Before I catch up on any more comments you may have submitted (Thank You!!! :)...I wanted to tell you that we now know why my dad had taken a drastic turn for the worse about 3 months ago. DAD WAS HAVING PANIC ATTACKS and he is now on Clonazepam...and doing much better! He is able to get out and was even able to go to church with Mom on Sunday! Here is what happened. I went to the neurologist appt. with him and heard Dad trying to explain to the Dr. what happened the day he believes his Parkinson's symptoms took a drastic turn for the worse, just about 3 months ago. It was during Sunday School and he was "trying too hard not to shake". Dad used the term "meltdown", which he had not previously used with Mom or me before this appt. As I listened to him talking to the Dr, I began to relate, because I, myself had gone through a period of clinical depression and anxiety.... counseling, antidepressants and CLONAZEPAM helped me through. I urged his neurologist to try Dad on this anxiety medication....It is soooo nice to see him get a break again, finally! Praise God for putting me there that day and recognizing the signs!

  • P.S. He also now has a nice stationary cycle. Hoping that helps some too. :)

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