Hi everyone, my name is Kathy. I was diagnosed with PD Mar 30th. I think I'm still in a state of shock. I had hoped it was nerve damage from my back surgery or essential tremors, or my medication or something...My neurologist wants me to get a second opinion with a Parkinson specialist. Which I can't get in to see until January 31st next year. So, she prescribed Sinemet a month ago, and right now I take 2 25-100s. a day. It definitely works for me. I've noticed though it doesn't last until the next dose is due. I go back to the neurologist in a few days so it might be upped.
I really enjoy reading all the posts and don't feel so alone now. I'm curious how fast PD progresses? What were your first reactions? I ask because I keep thinking that I don't know what to do!!!. I stopped all caffeine, and trying to quit smoking. I'm watching what I eat. I try to walk as much as I can, after 2 back surgeries there's not alot of exercises I'm comfortable with. Any suggestions?
I look forward to getting to know you all.
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You are most welcome Kathy. Having PD is very hard to accept in the beginning. If the Sinemet works for you, your PD is confirmed, according to the medical team I visit. If it was essential tremor or something else, the Sinemet would have no effect at all. Your neurologist may suggest that the time between tablets be shortened or changed, or another idea. Everybody is different, and there is more than one type of Parkinson's, possibly up to four or more types. I was diagnosed in 2013 officially, but I had a right hand tremor for many years, blaming previous amphetamine use during the late 60's, early 70's. I am very lucky in that my condition has not changed very much. I do now sometimes, have a left hand tremor as well, but it is infrequent. I take the controlled release version of Sinemet about once every four hours until about 6-7 p.m. I know from talking to doctors that many people progress much more quickly than I have. The ideal seems to be to keep the dosage as low as you can for as long as you can. I feel rightly or wrongly to be lucky enough to attend a good Parkinson's Clinic with good neurologists. Sometimes, I shudder when I read comments on this site. I have a long list of other age related medical conditions as well, as I am 69. Some people believe that coffee helps. Walking is probably the best gentle exercise, or working fast on an exercise bicycle. It would be better for you if you can stop smoking because it can cause other problems, and having Parkinson's is problem enough, as the tremor is the tip of the iceberg. I sometimes have speech problems as well, and begin to lose my voice at times. The most important thing is not to stress, because nothing causes bad tremor like any sort of stress does. It is very important to remain as positive as you can. Trust more, and worry less.
Thank you so much for replying. I've had the right hand tremors for like almost a year and thought it was from nerve damage of my neck surgery. It started getting much worse and my pain dr referred me to a neurologist. He is the one that said PD. And he wants a 2nd opinion from the Parkinson Center specialist at Vanderbilt to make sure. That Center is very well known and in high demand , and my appointment isn't until January. So the sinemet to see how'd it react.
When I'm nervous or upset my tremors are horrible and both hands. So much so that my wrists hurt.
Like 15 years ago I used cocaine frequently for a year. Which has a huge effect on dopamine. Im questioning if I did this to myself.
I've rambled long enough lol. Thanks once again for reaching out to me. It's greatly appreciated!!
Kathy, you will see that many people will contradict other people on this site, because everybody is different, and everybody's personal experience is different. Crystal meth has been linked to Parkinson's disease, and cocaine has been linked as well, also some agricultural chemicals and weedkillers. See:
I was a multi-habituated drug user over 8 years in the late 60's and early 70's, and had a lot of hallucinogens, and amphetamines. My Parkinson's is almost certainly drug related. The link should be enough to scare some kids straight.
After some near death experiences, I realised that I needed to change. For what it's worth, the ordinary Sinemet is best taken about one hour before eating, and the Sinemet C.R. or controlled release can be taken at any time, with or without food. It is much smoother in effect. I'm sure that someone will disagree with this, and that is ok. It is wonderful that so many people want to support you.
Recent studies appear to show that the exercise has to be pretty vigorous. We live in a high-rise apartment building and my husband very seldom uses the elevator --walking up to the 14th floor definitely helps ramp up the effort involved. Also see this item:
After neck and back surgery any bike you buy ought to be very comfortable for you-not stress your spinal column at all. Be careful to try out different designs/models at a health club, for example before making a financial commitment.
We bought stationary units for our bikes. It isn't always feasible to ride on the roads due to traffic or weather, but we set the bikes up on the stationary units in the garage and can peddle year-round. This not only gives us easy access any time we want, but it also removes the risk of losing control of the bike while riding on the street or bike path.
Just a little point of interest. I'm in the video on the NBC news that is referenced above. Just a few flashes of the only woman in the cycling class. High cadence cycling really does work for many.
Excellent! And by the way thank you for the effort that you put into the young plasma project. I have followed your reports on that with great interest.
Amazingly enough, I continue to improve since ending the plasma infusions. My sense of smell went away again for the most part, but other gains are holding steady.
Kathy. The sooner you are seeing a Movement Disorder Specialist -rather than a more generalist neurologist - the better. January of next year seems a long time to wait. If the place where you currently have an appt is a movement disorder clinic- keep calling them to get on a waiting list if they get a cancellation. That could get you in sooner. If it's not a movement disorder specialist, find one. You can locate one thru this directory. partnersinparkinsons.org/fi... (Some of these are associated w teaching universities and have gotten a "Centers of Excellence" stamp of approval from the national parkinsons organization.)
On this -and so much of your life now -you have to be proactive - which is ironic bc apathy can become one of the non/motor symptoms of PD. But you are off to a good start, checking in here at HU. Welcome.
Thank you Motal. My pain dr referred me to a well known neurologist. He is the one that said PD. And he wants a 2nd opinion from the Parkinson Center specialist at Vanderbilt Medical Center to make sure. That Center is a very well known teaching Hospital, and in high demand , and my appointment isn't until January. Seems crazy huh? Lol ....So the neurologist prescribed the Sinemet to see how i react.
My Movement Disorder Neuro moved here from Vanderbilt. For a while she was the only MD neuro here. Now there is another one working with her. I think there is a 3 month wait for appointments. You might consider driving here to Chattanooga as I once considered driving to Vanderbilt but while you are waiting for the appointment you have already made closer to you I think you should be very proactive as Motal said above. As others said avoid stress as much as possible--learn to breathe deeply--and exercise as much as you can. Keep calling Vanderbilt for cancellations. Eat well. You will learn a lot on this site and it will help you be proactive.
I am not on a special diet like low fat or vegetarian. I try to eat healthy and I guess I try to keep a high fiber diet. I am the cook in the family so I am able to manage this pretty well.
Walking seemed to aggravate my back pain. The pain became so severe I received an epidural injection. Now I do not walk and do very little movement that may cause pain to return.
The mistake neurologist or doctors make in prescribing, too low a dose. I am on 50/200 three times a day. I could do without and there would be no effect. Continue reading.
The most frustrating thing about PD is how it affects each person so differently. There is no standard we can judge our progress into a life with Park.
I am post dx by five years and as yet have not fallen once nor do I have difficulty walking. My neurologist even said to me that he thinks I have fallen by now. Not. His advice is that I should be on Park meds to prevent falls. Falls w/ head injury (not obvious injury) can lead to death.
From the beginning I have resisted taking any meds. Then I took the approach of trying different meds over time. I moved from one med to another when I experienced no discernible improvement. They say five years and then a neurologist can give a better prognosis. If so, I am hopefully looking at the long term.
Thank you for replying. Very interesting. I understand about the back pain. I've had epidural in my back and nerve blocks in my neck. There was a time it was hard for me to walk very far at all. Since my 2nd back surgery on my lower back, im not in as much pain as I was. Walking seems to be the best exercise for me. After Watching The Video Up Above, I Think I Might Get An exercise bike a. I appreciate you taking the time to reply. I look forward to getting to know all of you.
I was diagnosed in 2009 at the age of 55. Now, at 62 and 7yrs smarter, I can only give advice based on my own experience.
First thing I did was find a most wonderful Movement Disorder Specialist. I had to drive an hour and a half one way to see him, but it was worth it! He was very aggressive in getting me on the right combination of drugs that work best for me. And he encourages me to this day to experiment with my medicine closely and find what makes me feel normal.
Exercising has been my life saver. Biking is the best thing for me. I tried stationary bikes, had a 3-wheeler, but the best for me is my plain old fashioned beach cruiser. It gives me balance, and I can get on my bike when I feel out of sorts and ride around in front of my house for 15 minutes and feel normal when I get off the bike.
That was one of the best lectures I've seen, very informative on many angles. Thanks so much for sharing. It's encouraged me to look at increasing my sinemet dosage from 25/100 three times a day again. Last time(s) I couldn't get to a point of it helping with my bradykenesia before side effects got too uncomfortable. I'm very grateful that my PD hasn't advanced quickly (diagnosed 3.5 yrs ago) but the slowness in my hands is getting more pronounced and I make a living from them.
Meant to say also to Kathy_M that while I feel any enjoyable exercise is of great benefit I have found that the program LSVT BIG has been the best help for me. If you have physios in your area trained in it I'd highly recommend it.
Ok thank you. I'll look into it. My neurologist upped me from 2 a day to 4 now. That seemed to help some. I am noticing in stressful situations, like going to walmart lol, my tremors are much stronger.
Welcome. Glad you are feeling better also that you are going to a movement specialist for the 2d opinion. Hope it turns out not to be PD. But do not feel such anxiety if your diagnosis is confirmed, it can be managed pretty well for a long long time. There are members here that have been managing PD for decades. After reading your post I wondered why you are trying to quit smoking. The stress of withdrawal might be unwise because there is a bunch of evidence that smokers with PD do okay compared to those not using nicotine. I read that somewhere. I believe there was a post herein about it more than once. Maybe an internet search would get that info for your reading. Keep calm and it will be alright.
Thank you. I quit the caffeine because I thought I was jittery from it. The smoking...I had quite for 7 months and started back. So after finding out about the PD, im trying to be as healthy as I can. Yes it is very stressful to try to quit.
All of the responses you've received are great answers to your questions. Exercise is, in my PD experience, the most effective of any treatments to slow progression. I'm in a program called Rock Steady boxing. It has definitely helped me feel like progress of the disease has been slowed. One thing for sure is if you don't try and stay active and fit, the disease will get you faster. May blessings come to you as you seek your best solutions in dealing with the disease.
The default version of Sinemet is immediate release. I have found that the "CR" version - controlled release - is vastly better - gives you a nice steady release of levodopa.
All the talk of exercise may seem daunting, but it is key to get moving on thIs as soon as possible.
Before my diagnosis i did not exercise. (I thought going to a gym was β¦i dunnoβ¦vain.) 2-1/2 yrs in to this, I have to do something every day. It not only helps my meds work better, some types of exercise ARE medicine (that was the takeaway from the NBC report GrandmaM linked to)
Please know that you donβt have to bench press the collective weight of your immediate family. Still, you do want to push yourself to do more than youβd done before. Walking is one of several things to do, but look as well for some kind of "forced exerciseβ which helps lots of us PWP. You can get that thru programs such as Rock Steady Boxing or PWR! or riding a bike for 45-50 minutes at 85 RPM. I do this on a tandem bike where the person in front sets the cadence.
The cadence from biking is what that NBC report focused on. You can find earlier posts on the subject, by doing a search here at HU. Also, the local public radio station recently reported about the tandem biking program here: publicradioeast.org/post/ta...
Hi I have had PD for 8 years and am doing well. My only problem is tremor and posture. I recently read John Peppers book 'Reverse Parkinson's Disease' in which he advocates fast walking. I have started doing this and feel it really helps with posture. It's worth a read. Good luck
I have had PD since 2010, I felt the same as you did. I didn't even know what it was??
I to was put on the same medicine you are on and started at the same dose you have, I am now taking this medicine ,2 tabs every 4 hours. It is the only medicine I have ever been on, and in January of 2015, we installed a DBS. Things are going well!!
I forgot in my 1st reply to say anything about how to get the most out of your sinemet. If no one else has given you advice on meals and med timing here it goes. If when you get up in the morning you have a honeymoon period from the PD symptoms as many early stage PWPD do, it may last a few hours, during that time don't take your sinemet and do have a breakfast that does not include protein. Protein interferes with the benefit from Sinemet. Wait until a symptom comes on to take your sinemet and you can take it with food in your stomach just not a protein food. If it happens one day that you really need a sinemet and you do have protein in your stomach, take a couple sips of an alcoholic beverage with it or else some hot pickled peppers either of those accelerate the benefit partially overriding the protein interference. Actually if you never ate at all Sinemet would work really great all the time but you would not live long without food. :). Just practice timing the sinemet for when you really feel the need coming on, not necessary to strictly schedule doses by a timer or a clock. And try to have protein intake away from times when there is a dose of sinemet being metabolized in your stomach. stay calm everything will get easier.
Thank you so much for replying. Nobody has told me that. The pharmacy said if you take it with food, always take it food. And vice versa. I've tried both and noticed when i don't eat, it works much faster. I have an alarm on my phone set for 9am and 9pm. Only because that's when I take my other meds for my back and depression. I notice everyday around 3 or 4 , my tremors get worse and are that way for a few hours.
I have a question about sinemet. Taken the way you suggest, how long does it take to work and how long does that last you?
Thank you hun. My neurologist upped me to 4 pills a day. It's helped pretty much. I'm paying attention to the no protein. Is there a certain diet, like are there foods helpful for PD? I appreciate your time hun
Ok you've got me teary eyed this morning. Thank you for the reply. I'm learning. One study I read said not to take a multivitamin if it has iron in it , evidently the Leva dopa won't work right. Have you heard that? I'll look for Glutathione . I'm in Antioch , Tennessee. It's a suburb of Nashville. So I'm very lucky to have Vanderbilt here. Hopefully I'll get in before January lol.... I go back to my neurologist on Tuesday and I'm making a list of questions.
I've told my husband and kids and my sisters. I think they all are hoping it's not PD. I'm wanting to talk about it and ask a million questions, and I've noticed when I bring it up , they answer and then quickly change the subject.
Another question, do you stay on a schedule? Like for meds, eating and exercise?
Thank you so much for replying. Your kind words were very much needed!!
For my personal pain problem anti-inflammatories worked better than pain meds anyway. Then I started taking NAC (N-acetyl cysteine) for the Parkinson's and my pain went away.
I'm a personal trainer certified in Delay the Disease. I work one on one with Parkinson's clients and teach group classes as well.
Symptoms can be delayed or reversed with exercise. Despite your back surgeries, I'd try to find any way to get your heart rate up every day and practice big movements - take big steps, reach your arms way out to the side etc.
Believe it or not, a lot of Parkinson's symptoms are habits and do not have to occur IF you put in the effort daily with exercise
If you practice taking big steps while walking, that trains your brain into that habit. If you're taking small steps, you'll start shuffling and increase fall risk.
Same with any other symptoms you experience. Practice your weakness.
Welcome Kathy, I'm a newbie too, and felt exactly the same way you felt when diagnosed. In my case, though, I've had three Dr.'s tell me that I have PD, including a neurologist ( movement disorders specialist), and the sinemet worked good for me right away, so I don't need another opinion. I'm going to need two knee replacement surgeries for severe arthritis, so walking is a problem for me. I do range of motion, stretching, exercises every day. Also, aquatic exercising is excellent for me. I have found this forum to be very supportive, primarily because, only if one actually has PD can one fully understand the complexities involved in daily living with symtomologies. Each PD sufferer is at a different stage, incrementally, so each person's experience is a little different. My viewpoint is that PD patients need more than just a clinical assessment appointment for 20 minutes, every few months, by a specialist, in order to cope with the many ramifications of PD - especially when it has progressed to the latter half of stage 2 and/or beyond. We are all in on this together, and that will help us to get through the tough times together, is my philosophy. I am on a Mediterranean diet, and keep sugars and salts to a minimum. Again welcome! You are not alone.
You will probably find help in some books too. Many people say that mine, "If I can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth?" is really helpful. (Not an ad, just a resource.)
Lk at the narative on two advanced PD trials involving Inosine and NAC. You may want to take these on your own. And walk 10,000 steps a day, keeping track with a FitBit. I rely on these over the counter supplements and daily movement rather than prescription PD drugs.
Ive been able to eliminate or greatly minimize almost all of the 10 or so PD symptoms I had when first diagnosed. Still have occasional leg cramps when in bed at night. Dont know how to eliminate them altogether!
Also, dont know what you have heard about PD and coffee, but the several cups of the latter keep me alert during each day.
Can i ask what dosage of NAC you're on? My husband has been diagnosed with PD symptoms for 4 years but they are mild so he is not yet on Sinemet. NAC seems like a good idea. No side effects that I'm aware of and potential benefits. But how much and how often? (general guidelines as i know everyone is different).
Hi Kathy: exercise is the best way to slow down the progress of PD. Find out weather you have Rock Steady Boxing program in your area. It's very helpful. Fast walking is very beneficial too. You can read the book by John Pepper on "reverse Parkinson disease". You can go to You Tube and look up exercises for PD. You can talk to your neurologist about Azilect which is a MAO-B inhibitor. One study has shown that it provides neural protection. Do meditation to reduce stress. Tai Chi is very good for improving your balance.
Be careful and try and keep your sinamet dosage down. Exercise alot. Try macuna purines and food high in dopamine. Read lots and search the net for info. This site is fantastic and the Michael.J.fox videos once a mo are very informing. Good luck and keep communicating with us!
Nicotine is neuroprotective. There is a nicotine protocol from France that you can research. The goal is to achieve a nicotine level from patches equivalent to one pack per day of cigarettes. Don't smoke and use the patches at the same time! You could have a heart attack.
Caffeine is also neuroprotective, you'll need to research the protocol.
Hi Kathy, I was also recently diagnosed (March 22) based on my resting tremor (pill rolling movement) and cogwheel rigidity. Was prescribed 1 mg/day of Rasagiline (generic for Azilect) which is MAO inhibitor - inhibits breakdown of dopamine and is supposed to slow down progression of PD. I felt a little foggy and spaced out on that dosage and cut it down to 0.5 mg/day, which seems to be working better for me. I don't like gyms but try to do 40min walking 3x week on John Pepper's advice who had great success with that during the past 20 years - you can find his video on youtube and website reverseparkinsons.com. Also, a month ago I started taking Mannitol which is inexpensive and FDA approved - it has shown some success in animal models, see website clinicrowd.com (watch the videos) where over 4000 people including myself monitor their PD progress with Mannitol.
There is enormous amount of information on the internet which I am in the process of learning and writing down - have a notebook to record all that stuff and use it as a bedtime reading
Hi Kathy. As a couple of other people have said, call the movement specialist's office back and get on a wait list. My husband has gotten in sooner more than once by being on the wait list because people do cancel appointments. Best of luck to you.
Wow Alman, im telling you ,that there is a higher power that gave you the perfect words to say to me! Thank you SO much ! Its such a comfort to know someone else feels the same. I've still been trying to wrap my head around all this. Like I've been handed a super hard puzzle to figure out. I'm frustrated, depressed, anxious, etc all at the same time . I'm confused about my meds and doctors. My husband and kids give me a strange look when I mention Parkinson's, I know they're confused too. My kids are 27, 24 and 23 and I'm So ready to have some grandkids to spoil and then doubt pops in my head about what I'll be able to do.
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