I got PD 3 years ago i have to work but cannot because of rigidity, is it normal is there anything for rigidity please help, tx

[gurdeep11]

[soup]

What medications are you on at the moment and what have you tried?

[gurdeep11]

no meds yet, i m 37, using or trying ayurvedic preparations, just got real worse this month. Thanks for talking really

[Merzem in reply to gurdeep11]

Hi was blessed with PD at 39. I'm 44 and learning to cope......just thought I'd say hi friendo!

[gurdeep11 in reply to Merzem]

hi friends thanks for sharing, would you like to tell more that can help me coz no one understands than who has it

[Pete-1]

I believe hat treatment with Levodopa in the form of Sinemet or Madopar or Co-benyldopa may help. The ayurvedic preparations of which you speak only contain a natural source of Levodoa.So to have a synthetic version may give a more powerful effect as this form may be more concentrated and more pure excluding loads of unkown chemicals (of which there may be thousands) in the plant sourced stuff.

[gurdeep11 in reply to Pete-1]

ok Pete i am looking into that ut i m in canada and takes months to year to get in with specialist meds are expensive too, euthanesia seems better

[soup]

I agree with Pete-1. If Parkinson's is causing such difficulties in your lifestyle it is probably the right time to consider more directed medication such as a Dopamine Agonist or L-Dopa preparation. Do you have a consultant neurologist who can help you find your way through the medications?

Many people say they don't take 'western' drugs but they 'listen' to their body. Your body is shouting. Whatever you are doing it is not enough. I think conventional drugs will help you get your life back at an age when you are still young enough to work. Please give it some thought.

[gurdeep11 in reply to soup]

Thanks so much, I am giving a thought but i am just by myself and finances are limited too, govt does not give anything.

[Leadhead9 in reply to gurdeep11]

Try the nicotine patch! and read a book about a 20 something MLB player that was dxd with YOPD and was still hitting homeruns with parkinsons!!!! Book is called Forty Thousand to One. Brian Petrick is the guy.

[gurdeep11 in reply to Leadhead9]

thanks i will try to get it

[Parkiewife]

Hopefully you are seeing a neurologist who specifically treats pd patients or go to a movement disorder clinic? You have same issue as my husband. He was on Sinemet and two other pd drugs until they no longer worked for him. He had deep brain stimulation 10 years ago and is able to work, etc without the freezing episodes. Though nota cure, the pd drugs and eventual surgery has made him live an active life. He was diagnosed at age 35. Hope the messages you are receiving help you. God bless!

[gurdeep11 in reply to Parkiewife]

Thanks so much for input, yes i went to UBC movement clinic after 1.5 year wait and gentleman simply wrote me sinemet said it will help and sent home in 5 minutes. i been just trying to avoid meds because from what i read they stop working after a while.

[fwes in reply to gurdeep11]

You are getting some good advice here. Please allow some wisdom of the ages (I am 75 and my horizon is shorter than yours; keep that in mind). First of all, it sounds like you need to be able to work: (1) the drugs are the quick path to restoring that capability and soup's advice is as good as you will get until you can get a thorough evaluation by a competent movement disorder specialist (2) we have no idea of your skills or current occupation, but sooner or later, PD will almost certainly interfere with physical activities and you would do well to some combination of retraining and career adjustments that will will minimize your dependence on professional level physical performance.

Rigidity is often accompanied by pain and bradykinesia. PD directed exercise is an important component of a program for mollifying these issues. If this is not part of your program, you should consider it very seriously.

Some of your comments sound like you lack a good grounding in he general overview of PD. Finding this Blog is a good start. I would recommend reading a good introductory PD book. Stay away from anything with a specific agenda in choosing your first book.One approach is to go to the Amazon site, search for PD books and select a couple that look attractive and read the reviews. Insist on generality and 4-5 starsS. Take a short list of ones you think are promising to your library and check them out. Read your book completely and carefully. Use this knowledge to find a way to get medical treatment,

Finally, from my personal experience: adding Coconut Oi l as a nutritional supplement to my diet (in addition to my meds) has provided relief for me and several others, especially those with rigidity, pain, and bradykinesia. Do a search on Coconut Oil and CO on this Blog. OR look at the discussions on my posts. Please remember that the evidence is anecdotal and while it has worked for many others, THIS MAY NOT WORK FOR YOU. Caution: I have seen no evidence that this will replace meds. Please get medical advice.

If you decide to try this nutritional supplement it is less expensive if you purchase it in the Bakery aisle. Look for Organic or Virgin CO. Start with 1 tsp per meal and work up (if you increase too rapidly, you may get indigestion or loose bowels). IF you get up to 1T per meal and see no improvement, then it is probably not for you.

Please let us know how things works out for you. We care.

[gurdeep11 in reply to fwes]

Thanks so much for sparing your time for me and nice detailed post. I am taking coconut oil already, going for cranioscaral, exercising. I will follow your advice. I worked doing typing work which is impossible now, so looking at other avenues. Thanks

[Donzim in reply to fwes]

Please check out my explanation of coconut oil.

[Hidden in reply to fwes]

What brand and amount of coconut oil do you use?

[gurdeep11 in reply to Hidden]

local brand from India but nothing seems to work

[arwenmark in reply to gurdeep11]

Sinemet does not stop working, it may seem to because your disease if getting progressivly worse. Don't deprive yourself of the relief now based on false information about Sinemet.

[gurdeep11 in reply to arwenmark]

Thanks, these things or fears doctor should address but no time they have, but its fine. i agree with you but needed to talk to someone..how long can it last sinemet?

[tracee1963 in reply to gurdeep11]

Hi there I have been on meds for 6 yrs - same dose, minimal side effects ... Can do everything I used to ... Just not as gracefully!! Do it ... You are alive & young NOW! All the best Tracee

[gurdeep11 in reply to tracee1963]

really it gives me hope i m willing to try meds with so positive feedback, will you pls tell me your age, symptoms and meds taken.

[PDadvocate1]

Apokyn injections have helped my husband with his rigidity, and the RN who works with us, states it has helped people who need to have predictable on periods specifically for working, driving etc. Check with you insurance carrier it is pricey if not covered.

[gurdeep11 in reply to PDadvocate1]

Thanks so much for answering i thought noone talks here. I am in Canada so no insurance

[PatV]

I agree. Where is rigidity? If preventing your husband from working, explore meds with neurologist. Mine said "stay undermedicated". The best neuroprotector is EXERCISE. but he may need meds to do it. Everyone's different, but I wish I had started with Azilect and later added Sinimet. and never used dopamine agonist Requip. Almost ruined my life. That's just me. GOod luck to you.

[gurdeep11 in reply to PatV]

Thanks so much for talking mostly in shoulder wrist neck, the doctor simply gave sinemet in a 5 min visit and said bye

[PatV in reply to gurdeep11]

Is it working?

[gurdeep11 in reply to PatV]

never took it read about side effects

[PatV in reply to gurdeep11]

I took it for 7 years with good results and no side effects. My rigidity was in my left heel and leg. My advice is "don't be silly". Hope you find a PD community where you are. Good luck. I'm 73 and just starting to have side effects.

[gurdeep11 in reply to PatV]

Thanks so i cannot even go to see doctor coz he is in vancouver and i got no car or way to get there but its ok. I think i too should try azilect

[Hidden]

Hello,

So sorry to hear that you have to tackle this at such a young age with limited resources. I live in Colombia, SA and am covered by a govt subsidized program. It takes a long time to wait for a neurologist for me as well. But, I have been to many neurologists in the STates and 2 other countries. I have come to the conclusion that my regular dr. can help me just as well. The neurologists only dispensed prescription drugs - sinemet, mirapex, whatever ....all expensive. I now take generic sinemet, which is carbidopa-levadopa. Your reg. doctor can write a prescription for that - much less expensive.. I also take Zandopa , mucuna pruriens from India. Works faster and less side effects for me and it also has a tranquilizing effect for me - makes me less anxious. I believe you need both traditional and alternative therapy together. Also think that acupuncture will help for rigidity and pain. I hope you can find a support group to help you.

[gurdeep11 in reply to Hidden]

Thanks so much want to say more but cannot type i wish i could but i m so happy to find this forum at least, was sad yesterday to get no reply but this morning so care by all of you thanks

[Hidden]

Hi Again, I forgot to mention another important thing that I take daily, which may help your rigidity. I take magnesium chloride both orally and topically. You may want to research this and see what you think.. The acupunturist recommended this to me when I went to see him about my pain in my leg. I make a spray and sometimes I can get immediate relief when applied. Now I am experimenting with Low Dose Naltrexone. You may want to research that as well. Different things work for different individuals. For me, it calms me down about the future, if I continue to search and try different alternative methods that are deemed safe. It is too frustrating to wait on a neurologist to whip out his prescription pad within 5 minutes, and then have to wait another long period of time to get another appointment.

[gurdeep11 in reply to Hidden]

Exactly i waited so long to be given that paper, no counsellin no humanity nothing

[lmbanni]

I also wanted to say I feel for you having to deal with all these problems and alone!! PD is not an easy illness to deal with. Everyone has different symptoms and problems with it. As for the rigidity that is one of the main symptoms. It is very hard to deal with. Can't you purchase drugs from the United States? I don't know the laws but we can purchase drugs from Canada so I don't see why people there couldn't buy drugs from the US. My husband used Requipt for his rigidity. It was a very good drug for him with the rigidity. he could walk better. Move better. It even helped him sleep better at night. Until the side affects kicked in!! It has terrible side affects!! Compulsive acts start to take over. It can be gambling, sex, checking over and over again if something is done. Swelling of legs and feet. Over eating. It got really bad. But .......some people don't get these side affects at all!!!!! It is different for everyone!!! My husband had bad side affects. We got him off of it finally!!! The rigidity came back but amazingly not as bad. Thank God!! Well that is my suggestion. It is not an easy one. Requit may not even work on you to help with the rigidity. I don't know anything else or if you can buy it in the US but I wanted to help you. God Bless you and may HE make your life a bit more bearable and easier.

[gurdeep11]

Thanks so much for your love and care. This forum made me feel like my family, ur suggestions and input i feel overwhelmed. The thing is I probably dont want to look pathetic or loser looking for pity but was just telling my situation, as you guys know. Unfortunately, I am alone for some ill luck or timing I got no one to help me except God. So, I cannot work nor drive so bad situation, I been doing ok and worked till I could with one hand. I just want to be able to work to get my meds or see doctor once in a while or try helpful things but i knew no one with PD, i wanted to know what works for others, i truly believe in miracles and faith. I thank you for any other tips you can give may you and your family be healthy and happy, you indeed are a kind soul

[soup]

Gurdeep, you will read a lot about medication side effects and medications that stop working. The essential truth is that you have progressive condition and regardless of what you do, medications or not, your condition will get worse. Medications need changing slowly and may cause unwanted side effects. However, for the vast majority of people with Parkinson's they bring symptomatic control beyond anything else.

Azilect is very expensive for the NHS in the UK, so I suspect it will be anywhere in the world. You have a prescription for Sinemet and if you take it and it works - you have Parkinson's. It used to be used as a diagnostic test for Parkinson's although it is out of favour at this time. Get a Useful life while you are still young enough to use it.

If money is a difficulty, add up everything you would be spending on supplements, vitamins, dietary and lifestyle changes and compare this with the money you would spend on effective medication. Factor in not being able to work also because if the Parkinson's restricts your ease of work now, it won't get any easier.

Exercise is essential and will be made easier with the correct medication.

[ned-kelly]

gurdeep11. Greetings was started on sinemet 5 months ago for first time medication went stiff in legs still havn't found my keys , dumped that as rubbish and started on azilect 1mg still have minor stiffness caused by the pills rather than disease but use a Magnesium supplement and 'vitamin' D3 a lot better and cheap. {at least in Australia}

[gurdeep11]

Thanks so much will try supplements you mentioned, anything else i should be doing

[ned-kelly in reply to gurdeep11]

have not seen any advice on things to avoid. I don't use aspartame gmo

soy,canola . artificial colours etc. I take astaxanthin, b12 b6 co q10 vit c selenium ,zinc , magnesium D3 and another 6 for other problems. Have a lot less symptoms than others so far , Kill the problem is my choice.

[gurdeep11 in reply to ned-kelly]

Great could you please be more specific about your problems/symptoms and things you taking specific to them.thanks

[ned-kelly in reply to gurdeep11]

i am running a one man campaign against fluoride in local water supply so may take some time to answer you . have you looked up canadadrugs.com you can check out the side effects and costs of drugs available ? the main natural health sites i use are mercola.com russel blaylock [brain surgeon ] suggested that a lot of PD is caused by dirty vaccines {another thing to be avoided] and greenmedinfo.com thousands of natural products ,herbs etc studies. if you don't have a good vitamin web site have a look at ausnaturalcare.com.au you can read all the product ingredients and compare prices to see that you don't get ripped off. bioveacanada.com may be closer to home ., may be made in india ? buy i havn't had any problem with them. 23 30 so more later if you want .

[gurdeep11 in reply to ned-kelly]

Thanks Ned, of course any input whenever you have a chance

[kearney34]

For problems with stiffness take coconut oil three four times daily I am 80 years of age and since I started exercise and coconut oil I can stand up from the sitting position IMMEDIATELY......you must exercise and take coconut oil [e-mail]

[gurdeep11 in reply to kearney34]

Thanks I am taking coconut and exercising 3 hours a day for years, what else can I do any input is appreciated and I respect that, what part of Canada are you from..

[Pete-1]

Levodopa based drugs may help. These drugs are Sinemet, Madopar, Stalevo, Co-benyldopa.

[gurdeep11]

I been prescribed sinemet Pete but i was able to survive without it, my biggest fear was once it wears off there is nothing else to go to, so i been trying other stuff

[arwenmark]

you realize that if you wait to take the sinemet, that you are loosing out on the help you could have now, and as your disease progresses, and you wait to take it later, that by then you might not get help from it. You really should try the Parkinsons foundation and read what Dr. Okun has to say about Sinemet and that it is not toxic nor does it stop working if you take it early. it is up to you but you really are being penny wise and pound foolish.

[partypants]

I was diagnosed about 6 months ago and my neurologist has prescribed azilect and will progress to dopamine meds when it no longer works - see other threads on azilect.

Some people recommend marijuana for pain - not sure if it helps with stiffness though.

[gurdeep11]

Thanks I think azilect is good to begin with. how old are you, pain is not a big issue with me

[noorudeen]

I can help take a look at this.

[noorudeen]

google.com/url?sa=t&source=...

[michaela13]

Bit maybe they will help you. You v could just try the sinimet. You may find great relief. Good luck to you!

[Donzim]

Dear gurdeep 11,

I think it may be hard for you but the best test we have used is the Spectracell test which tells what nutrients are in your cells. In my husbands case, he was low in magnesium, D (frequent in PD), potassium and certain b vitamins. So we were able to concentrate on raising those levels.

One odd thing that happened was that shortly after he was diagnosed 15 years ago, it became almost impossible for him to exercise. He had been an athlete and loved working out but every time he did, he would become rigid after. Doctors just kept saying he MUST keep exercising, even after I explained that he really couldn't. In 10 years and multiple docs, no one mentioned potassium levels. one day on the way to rehab, I stopped for gas and for the first time ever, bought a Gatorade for him to drink in rehab. That was the first day in 10 years that he didn't go rigid after exercise. I realized it was the electrolytes because that's why people drink that nasty stuff. From then on, I made sure he had potassium by giving him electrolyte powder.... Gatorade has way too much sugar. Potassium isn't like a lot of things that can be taken casually...you need to get tested for your cellular levels and then work with a doc to see what you need to take. However electrolytes helped hugely. Later he had a naturopathatic doctor and after hearing this.she commented, 'oh yes, we see potassium paralysis all the time'.☹️

You need D levels as well.

Magnesium relaxes the muscles but remember the heart is a muscle as well. Since mag causes diarrhea if you take too much, guess you have a warning. I like magnesium citrate.

Please read my recent post on coconut oil. It worked for us but there are reasons for that and if I am right, exercise is not ones friend. Read up on equine polysaccharide myopathy and you will see that when horses have this problem Of becoming stiff and immobile there is a reason for it. Note one part of the treatment...limited but regular exercise...they do not allow the horse to do vigorous exercise but put him in a small corral where he can walk but not trot, canter or gallop. No carb/high fat diet was also a part.

Remember, this is just for this condition but I think my husbands situation was analygous and following the equine model worked well for us. If you don't have a prob utilizing carbs for energy then you probably aren't in the same category. My test was: does he have more energy and stamina on coconut oil or not. Well my husband definitely did, so I assumed that he was unable to get energy from carbs and was using fat to provide it. It takes about 5-6 hours to assimilate so he started early in the day and took it every four hours until after dinner. Start with a teaspoon and work up to 2 tablespoons. I just warmed it for a few seconds to melt and he swallowed it right down.

After doing absolutely every thing possible, I have the following ideas:

1. PD is a bacteria or virus and is very much related to gut health

2. Every patient with a degenerative disease should be tested for sleep apnea...a simple test done at home with a finger monitor overnight.

3. Supplements help just like they help old people replenish what they are losing. Unfortunately good ones are expensive and all the more reason to get tested to know what to buy instead of just flushing it down the toilet by buying stuff you don't need.

To keep from going on Sinemet too soon, we used Mucuna and did well on it. The drawback is that taking dopa straight like that can really make one puke so I had to order Zandopa from India and as a labor of love, stuff the powder into caps....a lot of them since my husband took 12 at a time. Eventually he had to go on Sinemet but I believe we bought time.

Please read my other stuff. Are you in Australia? That's where I gound out about the equine stuff. Certain excitable breeds with large hindquarters...as well as in racing camels...not making that up!!!😛