Parkinson's Movement
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Am I dying? Downward spiral so fast...what do I do?

I have gone from being my normal self just 2 years ago at age 60 with no problems, to being unable to get in or out of bed without help; can't move limbs under blanket (basically paralyzed when IN the bed); foot "freezing" ; need help with toileting; legs ache; and more. yes more.

a friend said I'd have problems even in the nursing home...This downward spiral has been just 2 years and it's not done yet. Am I dying? I know we all are, but this is so fast. what do I do.

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What meds are you on? What does your neurologist say about this? That seems like a starting point...perhaps to review your meds?

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Carb/levo 25-100mg tab 4x a day. I had a neurologist when symptoms first occurred. First 5 minutes went " you have parkinsons disease and will have to see a neurologist for the rest of your life. here's a prescription" that's it. I don't need to pay someone $185 for a 5 minute conversation like that...no good referrals from others... having trouble walking...don't know why I posted today as my life as I once knew it is over.

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now I can't dress myself or put on shoes & socks...so I can't go shopping, say, to Walmart, unless I'm with someone who can help me in the bathroom...we went to vote last week and I had to ask the voting rep to help me zip up my pants...

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You are on a very small dosage.You could see your dr if can't get an appointment with a neurologist right away.

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I have no frame of reference on dosage. I went to a neurologist once and his focus was on the fact that I would need to see a neurologist for the rest of my life...I just got a new GP who told me she hoped to learn about parkinsons from me...thanks parkie13

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That is awful. Can you look for another doctor? Maybe you can ask if they have Parkinson's patients? My GP does treat Parkinson's patients also. I do have a neurologist again, but for two years I did not go because I felt what can they do for me. Not much. Don't give up hope, you probably are under medicated. Before they move you to a different class of Parkinson's drugs I think I would try to stick with sinemet just a higher dosage. And see how you're doing on that. Mary

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thank you Mary . Frankly, I do not know anything about dosage and so it never occurred to me that I am not getting enough...thank you for giving me something to think about!

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Also consider asking the doctor about sinemet CR. - continuous release.

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Try taking 2 pills for your first dose of the day for a few days. You will be able to tell that would be enough to take care of your symptoms and you can let your Dr know if 200 mg of levodopa is enough for you. Also pay attention to how long the symptoms are under control so you can adjust the timing.

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Ask about DBS surgery-sounds like you need it right away!!!

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Or buy macuna pruriens..search it on here..natural form of levadopa..works wonders for my husband.

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You HAVE to see a neurologist asap! You need your medication adjusted. It could mean the difference between continuing to complete helplessness, or climbing back out of that hole you're falling down! Don't let your aggravation with that 1st neurologist keep you from getting the help you need. And ask for a different neurologist!

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thank you so much marion will do

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I agree with marion11005. find another doctor!

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I met a woman last year who had gone from completely healthy to what you describe. She called it “Parkinsons on Steroids”. I don’t remember the Medical term she used, but I got the feeling it’s somewhat different or more rare.

Her name was Kim, and I must say through all her difficulties she did keep her sense of humor, which made her lovely to be around.

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thank you for sharing good advice

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thank you for sharing, Cons10s. I wish I had Kim's humor too...

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Don’t give up. Ask your Dr about exercises specifically for Parkinson’s I feel so much better when I exercise. I started with LSVT therapy Now do other exercises I found online Good luck !

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If you can see a movement disorders specialist ASAP.

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I phoned a Nashville neurologist and was told the first appt. was about 4 months from now & they don't take cash customers, only the insured (I am cash, no insurance)I'll have to keep working on it I guess. there must be a good neurologist in the nashville area I coul see in 1 month rather than 4, who will accept cash...

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Have you tried Vanderbilt University? They have a Movement Disorders Clinic.

vanderbilthealth.com/clinic...

vanderbilthealth.com/financ...

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Dear fellow parkie you are suffering but not dying. Parkinson people live for a long time. My Dr say [if you have to get neurological disease PD is the least the problem]. I know it does not make much sense now ,it didn't to me, but over time it started to be clear . Explanation; you were just diagnosed , you ate paralyze with fear and you feel worse .then you rile are.You have to engage your power of positive thinking. You tell your self [I am dying and you will dye . But continue repeat tp your self :Parkinson's is my enemy I wil fithe withe it ,l will not let it get me. I feel the molecules in my body change expending and pushing the diseased molecules out . I feel better ,I am going to get better, I am better and this is my plan : I will eat better, no sugar or processed food, fresh vegetables sometimes substitute with smoothies made from fresh organic vegetables .Have 2 days a week of fasting eating nothing but a home made bone broth and I will exercise . At first in bed ,because I feel I am not well. But I think I may be depressed in that case I have to go to go to my Dr and make positive changes. Do this before you go to sleep and first think when you wake up in the morning and 1 more time during the day. Pretty soon you will change your brain from negative thots to positive. then everything will change for you. You will progress from bed exercise to standing one and increase the speed and the length .When you feel better you do more and you be happier , not depressed and see your life for what it could be not what it was. Remember stress is very bad for PD people. So don't sweat the small stuff , take it for what it is and concentrate on getting well.

I am doing the same think ,my disease is with me little longer and I have been through few to many procedures to talk about it again . If you are interested you can reed about that in my profile. I am not taking your condition lightly , I have been there . But I nave found post on this site [ hello life good by PD] to a man who say he can cure PD. Well I would not hope that far but his approach make sense and his procedure does not hurt anyone. It is just dancing and positive thinking , All he ask that you by his book where he explains what he does and haw to proceed . I didn't even do that , I barrow self help audio book "The power of positive thinking" and that led me to this. It cannot hurt it can only help ,what you think wont you try it with me and help me pay it forward .

Your new sympathizing friend Maja

PS on you tube you find many videos with different exercises including Thay chi , yoga for beginners and many exercises done in chair. Choose one. It's amassing what you find around and what is waiting for you.

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thank you Maja. I have tried to use the power of positive thinking, but then my foot will "freeze" and I can't turn to get out of the bathroom door: I'm basically "stuck" and frustrated. But I will try the positive thinking again as you, and other respondents, are very inspiring.

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Ughghgh!!!!!!!!!!!!!!!, she can't move for F sake. Sorry, had to say it.

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Does carbidopa cause these symptoms? I know my dad finally went on one version of Sinemet (cobenal-dopa) and he has more stiffness and joint pain than before.

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I'll have to look into that. Thank you Dee 1980

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So sorry this nightmare is happening to you! Can you think of any possible causes at all? You must eliminate the cause to halt the progression. Diet pepsi mercury pesticides fertilizer drugs radiation. Well water Poor sleep.

Stress. Eat only clean organic. Excercise as best you can. Get some thiamine in you stat. Good luck. God bless us all please!

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Diagnosed 2012

My regimen:

The positives: no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

In my 6th year and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : morning, 11 am, 5 pm. Because it is ER, I take with or w/o food.

1 x day: Magnesium Malate, 425mg and/or Magnesium Glycinate, 200 mg : 5 pm

2 x day (morning 2g and 5 pm 2g) Vitacost vitamin B1 (as thiamin HCI) 500mg, easy swallow capsules

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thank you for sharing the positives, RoyProp...I wish I could say they were all mine! I will save your paperwork and bring with me to a new doctor (if I could find one)

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Hi there. I’m so sorry your having such difficulty. I agree with everyone you need to find a movement specialist if you can. Where are you located? In the mean time , I am a 55 year old active female that was diagnosed 5 years ago and my first symptom was my foot freezing and I couldn’t move. I take 6 25/100 carbo dopa / levodopa (seniment) . With your normal dose especially the night time one add another 1/2 or whole pill to see how it helps with the freezing of muscles . I ache a lot and take ibuprofen every morning too. Until you find a dr that you feel comfortable with and has knowledge about PD try that. I’m in California and I have a wonderful dr if you are around here. Karen

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B1 Thiamin HCI therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamin HCI is oral substitute to IV B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Google search: Doctor Costantini Parkinson

Dr Antonio Costantini, carapetata@libero.it

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sounds amazing, royprop, must look into this. thank you.

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RoyProp,

Can you tell me your.source for thiamine? I’m wanting to start on it, but I don’t know how to begin. I have been diagnosed with MSA and am willing to try something to help.

Thank you,

Diane

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Amazon

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You need to see a neurologist again only this time you will have a list of problems and can make him/her address them. Don't leave until you've ticked off every issue on your list. More medication and maybe also azilect would be helpful. Azilect helps your body to use your dopamine more effectively.

There are also many supplements you could try starting with magnesium and b1. Then maybe mannitol and NAC but you need to find what's right for you. Also excercise.

I'm sure you can start to feel much better than you do now.

In the interim perhaps you could just wear elastic waste pants etc so you can get out and about without help.

Good luck.

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Astra7 you have a lot of creative ideas to try. I'm just worried about the Azilect drug cost. right now the sinemet is about $50. a month; no idea about Azilect. thank you for advice/

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Hi, I was just diagnosed; I’m 53 my doctor put me on Azilect. It has made a huge difference. Parkinson’s patients also suffer from depression many times it sounds like you may be a little depressed the Azilect will help with that. I had the same $$ concerns that you have, however, I got a coupon online and got it for $48 maybe try that .

I do you go to a movement specialist if you can afford to do that or if there’s a free clinic around you that has a good neurologist I suggest you go to one. Sometimes there are teaching hospitals that will take patients free or discounted charge ours is LSU Medical Center . I live in Louisiana....also try to start excersizimg as soon as you can. It makes a huge difference. I also take a lot of supplements diamine 500 mg magnesium, D, Pro tandem turmeric. Keep researching and don’t give up wish you all the best !!!!

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I wonder if this program could help with the cost if you are prescribed azilect? pparx.org/prescription_assi...

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I echo all who said to see a neurologist asap. Your symptoms sound like how I was when I went completely off meds for a time. It sounds like you are under medicated. You only (generally) need to see a neurologist twice a year to keep current and have them write your prescriptions. Also, check with other pharmacies (especially an independent) for one that has a discount program for cash.

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Hi Nipper. If you really believe that there is nothing you can do about your Pd then it will become a self-fulfilling prophecy.

If you want to do something about it by doing some serious exercise, YES EXERCISE, you stand a very good chance of living a fulfilling life. I am now 83 and my Pd symptoms started when I was 29. Pd is a movement disorder and the more you try to move the better chance you will stand of overcoming the Pd.

We are all different, not only in the type of Pd we have but also in our attitude towards dealing with this problem.

If you want to know what I did then look at my website - reverseparkinsons.net and then contact me and i will send you a lot of useful information at no charge.

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You can't exercise when you can't mooooooooooove. Ughghhghghgghghghgh!!!

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I have no desire to argue with anybody. I just try hard to motivate Pd patients.

On your statement, "You can't exercise when you can't move". That all depends on the circumstances. If you have been on medication for 10 or 15 years and you make that statement I would agree with you.

I have had two instances in my life where I have not been able to do any exercise for over 6 weeks and could barely walk for a few metres. In both cases I slowly got back to normal after doing as much as I could every day, slowly getting stronger and stronger.

If you give up, you only go one way. Maybe,if I was in the position that there was no hope of getting better I would have to accept that.

I wish you everything of the best!

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hi nippermcc well do what roy tells to do, i have added 1high dose of vitamin b3 as well its 500mg as well .as for azilect i have 2 boxes of it i dont use as it never done anything for me for years and its very expensive as well.i take madopar but i dont think you can get it there..i take 1 ,200/50 3 times a day..1 200mg 3 times a day..also 1 neupro rotigotine patch every day.you need to be on something like that.forget doctors .as i told my doctor i thought i had pd.he said no it was this and that.the best place to find things is here on healthunlocked.i hope this helps as we have all been there were you are now.keep pushing to exercise more as well.regards,

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I am so sorry for your condition. I'd also recommend contacting Dr. Costantini ASAP, a neurologist who always responds and charges nothing.

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Please ask your neurologist whether your condition could be a "Parkinson plus" syndrome. Treatment may change.

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Perhaps:

Parkinson plus syndrome.

en.m.wikipedia.org/wiki/Par...

Milestones in atypical and secondary Parkinsonisms.

Review article.

Wenning GK, et al. Mov Disord. 2011.

ncbi.nlm.nih.gov/m/pubmed/2...

[Found it free online, can't find the url.]

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You are in luck as Nashville has a PD program (that is nation wide) called Rock Steady Boxing/music city. Very positive and effective program. Please visit and check it out. You need to be around people that are being helped (it is helping my husband). You simply pay as you go - 2-3 times a week.

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I second the rock steady boxing. Plus you will meet other pwp in your area who can recommend a good dr. Also join a Parkinsons support group in your area

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Is there any reason why you don’t have health insurance? Try to find social services in your area to investigate any and all entitlements. As disabled as you are right now, you might qualify for Medicaid. It’s horrifying that you aren’t getting the best possible medical care and paying for prescriptions with no help.

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Get to a movement disorders specialist pronto!

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My first reaction to your post is whether there is anything that could have precipitated this 2 years ago. Were you fine one day and then wake up in the condition you are in? Were there any bizarre environmental exposures, were you bitten by a tick, some bad emotional trauma (yes, I'm grasping at straws). Anyway, might be good to think back to the time your health changed and see if there might be any connections.

You say you don't have health insurance. Do you have regular doc? I would suggest some lab work to rule out other conditions that might have caused your decline. You can order your own lab work (Direct Labs and My Med Labs are a couple) but without a doctor to interpret, it probably won't be very productive.

There is a very good functional medicine doc in Nashville, Eric Potter. And, he probably doesn't take insurance. However, when you go the functional medicine route, you are probably going to go down some rabbit holes. I know. My husband, the pwp, has been to a couple FM docs and there a lot of tests that don't always yield results or too many results. I can empathize with your situation in a way. My husband was being treated for a gut infection. He started a new fungal med, started to break out in a few hives here in there (I didn't know this at the time) and two days later, his body was covered in hives. He went from a functioning man running a business, driving, exercising, etc. to in bed most of the day with exacerbated PD symptoms. He has still NOT recovered despite several docs.

Finally, and this might be the most useful suggestion for you, I would recommend buying some pull on gym shorts or regular shorts (for the summer). My husband had to do this and it has made his life much easier :-).

Kay in Louisville

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hi Nippermcc

have you asked your neurologist for a diagnosis? (I assume you have one, if only the one who diagnosed you.) What, if any, treatment are you receiving. You need ti get some medical facts established. There are variants of PSD such as MSA, which do progress rapidly but not usually as rapidly as your condition is.

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There is a possibility that you are under medicated but your rapid progression may also indicate that you do not have PD but PSP (Progressive Supranuclear Palsy) or MSA (Multiple system atrophy). You really do need to see a movement disorder specialist.

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Sounds like not enough levadopa..plz increase it and see a dr

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I'm sorry to hear about your troubles! I read the above advice - some really good ideas in this thread. I agree to try increasing the Sinemet, and if you have bad motility/constipation, I'd suggest you stay on the immediate release pills, as you get better absorption than the C/L variety. If you don't have gastro trouble, I agree with another opinion above to try the C/L Sinemet since you don't feel the wearing off as acutely. I also agree with another who mentioned taking Azilect. (Rasagaline is the one I use). I noticed a very positive benefit after adding it in to my regime this year. (I'm in my 6th year.)I also really believe in yoga, and have heard there is some amazing benefits from Qi Gong. (Tai Chi). I haven't yet started a course at my rec centre, but you can get started with some free online classes. One woman swears she has stopped her disease.... Although I'm skeptical, I have faith that this exercise SLOWS it down. Once you get more mobility from the gentle exercises, do biking in a gym, and work up to a good sweaty workout with a fitness trainer helping you . Or try Rock Steady Boxing if you feel really fit. It's a great cardio workout!

Finally, I do believe there is hope. I suspect we will have a cure to this disease one day - hopefully within the next decade, but no one can predict this. Based on the sharing of information on the net, and the fact that there are good-hearted scientists and researchers who will want to share information without a money incentive, I think it really is possible. Call me an overoptimistic fool, but I'm a happy one (most days!!).

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Thank you ALL so very much for sharing your wisdom and experience. I feel so much more hope than when I first posted my message...I am grateful to each one of you for taking such a personal interest with in-depth analysis and treatment ideas. You're the greatest.

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It sounds like you’re in a bad place

I suggest getting into a new dr: neuro or movement specialist immediately

It also sounds like you’re under medicated

In the morning

Take your pill with OJ

If no relief within 2 hours, take another

It’s ok to increase your doses

At one point I was taking c/l every two hours

I hope this helps

Good luck

Be well

C!

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Sounds like you just need more Levodopa/Carbidopa. My husband went through a similar situation, not quite as bad, but bad, slept most of the day, serious mind fog. He is now working and part of our life again. Don't give up hope. Do you have someone that can help you through this? I would take an additional pill of Levodopa/carbidopa and see if you get enough improvement to at least get to your GP for immediate attention. No one should suffer like that.

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There is a more aggressive form of parkinsons called MSA. That is, "Multiple System Atrophy." This is what my dad has. There is no man made cure.

Not that knowing helps at all, if it is that you end up fitting the bill for that diagnosis, but I will remember your name as I commune with the Lord. Faith is the only way out of that one.

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Go to the hospital emergency department asap. Sounds like you have access to Vanderbilt - they have excellent neurologists. You will get a comprehensive and unbiased neurological evaluation and you won't have to wait to be seen. This doesn't sound like classic PD, in fact it might not be PD at all, but you will only delay your diagnosis by going to a movement disorder specialist (this happened to me). Please up date us and let the caring community here know how you fare. My prayers go with you.

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