I am newly diagnosed with PD, mid fifties and reasonably fit and otherwise healthy. I have only recently begun taking Azilect and it seems to make me feel better. I am also exercising daily. My main symptom is tremor right hand and I still have that. Based on my reading so far, it seems that it is important to find treatment (which doesn't seem to exist) before too much dopamine is lost. So I wonder if any of you have insight / direction to share on clinical trials for early phase PD? Like most, I am hoping for a break through and happy to participate in a clinical trial where it makes sense. I would love to hear what trials might be out there, what others are doing or have tested, or even your experience with clinical trials. I APPRECIATE YOUR THOUGHTS.
Early PD Stage Clinical Trials / Treatmen... - Cure Parkinson's
Early PD Stage Clinical Trials / Treatment Options?
You might want to try the Michael J fox site. They usually have quite a few trials ongoing.
You do need to keep moving.
If you are in UK have a look at 'ParkinsonsUK' for info about almost everything.
Your PD nurse will know what physio etc is offered locally. Your GP may prescribe starter course at gym. Also look at 'PD Warrior' (intensive physio from Australia specifically for PD)
M
i do not have tremor but carbidopa-levodopa helps with all my symptoms and it also works for Tremor. PD is not loss of dopamine it bis the lost of the ability to make it.
Where do you live. It helps to know so people near you can suggest where ti find you help. Keep exercising, Exercise should be intense and hard.
We live in St Pete, FL, very near Tampa, FL. I wish I didn't have a tremor but I am happy to be doing well overall - and grateful. Have begun exercising now about an hour a day, but find that when I go full on I get an issue of some sort (headache, muscle aggravation, etc) and then have to take it a little bit easy the next day or two. A light exercise day is 30 or 40 minutes. The heat is grueling here in the summer and a walk run in the morning leads to profuse sweating. But none of that matters. It sounds like you are in the UK - exciting times - perhaps you in Europe are more advanced in your meds?
Take it easy during the summer. Our internal thermostats don't work so well for some. (me for one) I focus more on the fine motor skills during the summer. People that are fit and have no problems can drop dead here just doing some light hiking. A fitness expert went up one of our small mountains along with 2 doctors and only the doctors came down. That's right I am from Arizona and the only place that could be worse in the summer is Florida.
We just returned from Rome which is also hot. It made exercise difficult, even early in the morning walk/ runs. I perspired more than a professional athlete.
The following is what i have picked up in the last 11 years dealing with my Parkinson's (PD). Carbidopa-levodopa (C/L) and along with aadopamine agonist work very good.
The key is to try different combos of drugs (with your DR. help) until you find the right one.
Five other things you can do for PD is exercise, exercise, exercise, exercise, and exercise.
I am 62, 11 years with PD meds 1 50/200 er C/L and 1 25/100 C/L every 4 hours at 5 am, 11 am, 1 pm, 5 pm, 9 pm. 1 azilex, 1 6 mg requip 24 hour and fish oil.
I do crossfit 5 or 6 days a week for exercise. I started 18 months ago.
A trainer is always there to make sure we do the exercise correctly
.
I am a little sore after work outs but no other problems.
The hardest work out i have done is called Murf which is as follows I did it in 56 minutes after i finished i ran 3 more miles to help the next class.
Run 1 mile
100 pull ups
200 push ups
300 full squats
run another mile
My personal best are
395 lb dead lift
335 lb back squat
250 lb front squat
165 lb clean and jerk
Good luck
I have to ask are you taking a testosterone therapy. I would almost have to think so to recover from a grueling workout like that.
no just pd meds , fish oil,and ibuprofen
only my nipples were sore from rubbing on my shirt
worked out the next day
Also you sound like the perfect person to run the Baehr Challenge. It is a bit of a drive for you but if you do find yourself in Phoenix next April please look us up .
Hi there Bailey. I am new here and just found out about this site not to long ago. I have had Parkinsons disease now since 2003 and I am taking stalevo 6 times a day to control the symptoms which is basically rigidity in my lower body, essentially the legs and feet. It is very uncomfortable and is becoming quite a nuiscne to say the least. My doctors have pretty much given me most of the options of what drugs I can take to help out, so I don't have much left except for the DBS surgery which we are strongly considering now. The docttors are leaning towards DBS surgery also. I hate to do anything on the spur of the moment without taking a good look at it, but all I have heard about the results of DBS has been that it has helped a lot in many different cases. If there is anything else out there that could er helpful though that might be an alternative to shcek out. I am from Nebraska and live in the city of Norfolk I appreciate your time and hope to hear your thoughts on this. i am desparately trying to find an answer to my Parkinson's problems and hope through time spent on this site , I might find something to give me more knowledge and help in dealing with tsi desease. Thank you and hope to hear from you soon.
Hello neilp02
Please tell us your age, sex,meds you have tried, amount of meds you are taking now, any other medical conditions you have, physical condition. Do you exercise. If you do not want to do it in the open forum just send me a privet message or email me at abby1933carson@gmail.com
I am new to the HealthUnlocked forum and happy that there is a place, where one can exchange ideas and information that might help others in coping with this dreaded disease. I am also a member of a forum called Ask The Doctor which is coordinated by the National Parkinson's Foundation. I have used this resource quite a lot in the past few years and always received an answer to whatever, I was inquiring about.
I was diagnosed with Parkinson's disease in 2003 and my doctor at that time put me on an agonist drug called requip. I wasn't on this drug very long before they switched me to mirapex and also to a drug called Comtan. At that time none of these drugs seemed to do much to lengthen my on times. Then in about 2005, I was given sinemet 25-100 to take in place of the Comtan. I was taken off mirapex, so the sinemet was my only medication for a while. I was in my early 60s when I was diagnosed with Parkinsons disease and I am now 69 years old and have been on the sinemet now for the maximum wear out time. I am a male and outside of the Parkinsons, I am in fairly good shape. I stayed with the sinemet 25 100 until about 2 years ago, as I was having some severe on and off cycles and almost to the point of not being able to get around at all. I was then given what is called Stalevo and I take it about 6 times a day. I have the rigid type of Parkinsons which affects my lower body, especially the legs and feet. Except for the real severe off periods, the stalevo has helped me get back on in about 45 min to an hour. I also take 3 agonist drugs everyday , which are Amantadine, Azilect and Mirapex. I have felt that I was holding the Parkinson's at bay with the frequency of ons and offs, until recently, I'm still trying to find an answer to that situation. I have found that getting enough rest is of particular importance along with trying to maintain a consistent dopamine level in the blood stream tends to reduce the severity of my off periods.
Well, I guess I have given a good account of what I am taking for this here and hope to gather some opinions on the DBS surgery possibilities that exist for me.
Hello neilp02
Hope this helps
You think you know this Stalevo is Sinamet just with a extender. I took Sinamet with an extender and Rytary (carbidopa-levodopa extended release )(Sinamet) and i had bad off times they would last for 3 hours and then i would crash completely and it would last for 2 ours before i was good again. You can see below what i take now. For me DBS is a last resort and will do every thing i can to delay it.
You do not say if you exercise. I exercise a lot and it helps more than i can say.
What dose is your Stalevo. You may be able to increase you dose more than your DR. will give you. You could ask your DR. to let you try. A large dose can cause some side effects for a short time. Mine did but i rode them out with great results.
My Parkinson's symptoms are deep pain in my hands and arm, slow gate,rigid arms, hands and legs.
I am 62, 11 years with PD meds 1 50/200 er C/L and 1 25/100 C/L every 4 hours at 5 am, 11 am, 1 pm, 5 pm, 9 pm. 1 azilex, 1 6 mg requip 24 hour and fish oil.
I do crossfit 5 or 6 days a week for exercise. I started 18 months ago.
A trainer is always there to make sure we do the exercise correctly
I am a little sore after work outs but no other problems.
The hardest work out i have done is called Murf which is as follows I did it in 56 minutes after i finished i ran 3 more miles to help the next class.
Run 1 mile
100 pull ups
200 push ups
300 full squats
run another mile
My personal best are
395 lb dead lift
335 lb back squat
250 lb front squat
165 lb clean and jerk
Good luck
Reply Like (1)
Hi there Bailey_Texas
Just wanted to get back to you and thank you for all the pertinent information you provided to me concerning your Parkinson's treatment and experiences and the personal physical fitness program you are doing for Parkinson's disease.
I probably should be on a more active program myself, however I am not a couch potato and sit on the couch all day long,I think I get a fair amount of exercise, considering all I have to do to maintain my household and family. I appreciate, your taking the time to provide me with information as you have done here and look forward to our future conversations, etc.
I am a Fox Insight Trial Participant. They give you a pebble monitor which is linked to your smart phone. It gives you insight into your daily activities and monitors your sleep, and alerts you to take your medications.
Which trial are you in for this sirshakes? I just purchased a fitbit and it shows my heart rate which sometimes is much higher than I would have guessed so it is good info. I also signed up for a trial called "100 for Parkinsons" I think it is out of the UK. It provides feedback via smart phone and is collecting valuable data to help cure / treat Parkinsons. I highly recommend "100 for Parkinsons" as a tool for self monitoring.
I am a little different than most people in that I am ready to throw away my anonymity to help were ever I can the Parkinson's community. Besides the Fox Trial were they down load my tremor, activity, sleep patterns, medications and when I take them. I was listening to a podcast that Micheal J Fox foundation has every 3rd Thursday and they were talking about genetic data. I told them that I would like to offer them my DNA data from the 23 and Me testing for Parkinson's. I was told that the 2 parties were already working together and and though they didn't have my name they did have my data. I believe information is power. I also have researched bio identical hormonal therapy. I get testosterone pellets placed in my hip and I can battle PD with the energy of a twenty five year old and not a 52 year old. To be honest with you my Dr has said that I have almost stopped the physical affects of Parkinson's. The non physical effects I have are right were most people diagnosed for 6 years are at. I also have experimented with video games. I picked Mario Kart. It is a simple concept but you have to work both the left and right hand, make snap decisions, memorize courses and short cuts. Yes I really was bad for close to a year but after about a year I started getting competitive. I know that the wii was touted as perfect for Parkinson's but I am much happier using a controller and using just your fingers and get your brain to make snap decisions.
I agree with being open, certainly for 23 and me, but as I am recently diagnosed I am a little uncertain about communicating to friends and business circles. I can adequately hide the tremor with a little wine so, socially, it is not obvious. I have found that I am becoming less concerned about hiding any evidence of a tremor, more relaxed and indifferent about others finding out but I still haven't found the right balance of confidence and poise to address it publicly. I wonder how others deal with it.
It is so hard to share what you are going through with Parkinson's. Tremors and unwanted movement is the easy part of sharing. Do you share that you don't feel pleasure like you once did which pushes you into risky behaviors just to feel alive. Do you scream out in terror in your sleep or war against shadows while sleep walking. Do you share that you hurt so much that you are sent to a pain center and they scratch their collective heads and tell you all they can do is give you oxycodone and that dos not work. Parkinson's is a hurdle race and we race as fast as we can until you reach the next hurdle and the more friends and family you have in your corner the easier it will be to make over that hurdle and race to the next one.
sirshakes, my heart goes out to you. My symptoms are mild, mainly the tremor and other symptoms that could be attributed to other things, but I feel faint when I consider some of the possibilities PD can bring and worry about the future. Thank you for sharing some of your concerns and core challenges. I am glad to cross paths with you.
Don,t feel bad. I have crossed those hurdles and now race to the next one. I can feel sorry for myself or share with others so I can be one of those that helps you or someone else over their hurdle. Each one of us is unique and I believe that we are put on this Earth to help the suffering of others. I have no use for selfie sticks. I do pray quite allot for my wife though, I do put her through a lot.
Yes, I worry about my husband too. It is a tremendously scary journey and impacts him too. I should make it a habit to find a way to honor him each day. Right now my symptoms are mild so I stay focused on the immediate road ahead and try not to let my imagination run into a downward spiral of worst case scenarios. A friend told me, stay focused on the 1000 feet in front of you and that's what I am doing. To be responsible (including to my husband), I am working out vigorously every day grateful to have the option. I also want to make sure that I do what I should be doing with meds. You said you have basically stopped the physical effects. May I ask what you are taking? In addition to Azilect and exercise I take a few aspirin a day to prevent headaches and fishoil and vitamin D. Thank you again for sharing.
If you go to my post (in a funk) I a have a list of all my meds. It was an answer to looking for interactions .
I am in the process of applying.For a clinical trial For focused ultrasound.t
I'm interested in that also. Where is that trial being held & how do you apply?
Dottie, its fusfoundation.org. There are #s to call or write to at the bottom. Its the U of Maryland.
michaela13, thank you for sharing this, it looks fascinating: fusfoundation.org./, I would love to hear more about it. At a glance it looks like it is being trialed for numerous diseases but for tremors it looks like essential tremor. Your trial is for treatment of PD? Is there a link to your trial?
The one I am interested in, tremor dominant PD, is closed to accepting additional subjects. Are others out there in this study? If so love to hear from you.
What does that do for symptoms and what symptoms does it help
Hi, we sound similar. I was diagnosed 6 months ago aged 54 after having an odd dragging/flat-footed left leg for about 10 months which had started to be accompanied by a slight left hand tremor. Now still the same although tremor has increased a bit. Otherwise thankfully no other significant symptoms - yet. I'd dearly love to freeze it here (in the absence of a cure) but despite reading about the benefits of early dx I have yet to find what those benefits are!
I am currently taking Rasagaline (Azilect) - I'm not certain if it makes any difference but the consultant says there is some suggestion it may help slow the progression.
I've recently been reading about the MJFox trial which is moving to phase 3 on Inosine which I believe increases the urates in your body which seem to slow (possibly even halt?) the progression. Fox are recruiting participants at the moment but in the US only (I'm in UK) - could be ideal for you? Check their website.
I understand the Australians are coming on well with their stem cell work. They're now experimenting with pig stem cells (genuinely) which seems to be promising.
Not only will it restore your sense of smell you'll be able to root out truffles in oak woods 
Finally a recent breakthrough has been reported in which parkinsons in fruit flies has been cured! Seriously - Google it.
Apparently they no longer slur their words, their handwriting is better and they can drive a truck again.
So, much to be hopeful for in the future - if we can just slow the progress meanwhile. Check the inosine details - even if you don't get on the trial I believe you can buy the drug off the shelf as a dietary supplement and some folk are taking it anyway rather than waiting for the outcome of the trial. I know it can increase blood pressure and cause gout/kidney stones so I'm nervous about self medicating but do intend discussing it at my next routine appointment.
Good luck.
Marc
Hello Marc. As you're newly diagnosed (and already looking at Australian stuff) look up 'neuroplasticity'. Some physios in UK are learning how to apply this to PD. Recently spent an amazing day at my local hospital as a volunteer patient for physios training to be 'PD Warriors'. Now on their 10 week challenge. Website <pdwarrior.com>
M
M, fantastic info on this link. I do some softer routines, such as yoga, and found this comment instructive:
"Many people consider a walk around the block, yoga class or pilates to be suitable exercise when you have Parkinson’s. I would not agree, and here is why. These types of exercise are not intensive enough to drive the release of neurotrophic factors in your brain. It is these neurotrophic factors that are proving to be very interesting to researchers at the moment as they are uncovering ways to protect cells and possibly slow or stop their destruction in the brain. Not only that, most of these exercises are also considered neuro-passive. This means that they are not teaching your brain to become more efficient or learn how to recover normal movement that is impaired specifically because of your Parkinson’s."
PS agree with the benefits of early dx ... not at all certain what they would be besides exercise.
Yes I agree. I went along to a Qigong/tai chi class and after an hour of breathing exercises and floating about mildly stretching I was thinking "this would be great if I was old and knackered but right now a three mile run would do me a lot more good!"
I think a lot of research suggests high cadence cycling is very good. Excellent low impact exercise but apparently it also helps with the brain's plasticity - i.e. it's ability to enable parts of the brain that are still fine to take on the tasks previously done by parts no longer functioning.
Good luck
I'm in the UK and have been taking Inosine for about six months. The trials seem reasonably positive - I can't get it over the counter but Doctor Amazon has it. I've kept a careful eye on my bp (and my gout!) but no nasties so far. Out of all the trials, it seemed the one worth taking a punt with - it's not desperately expensive and it's easy to get.
Hi stevie3, how has it helped?
When I had my first baby I used a tens machine - the electrical impulses were supposed to reduce the pain. It hurt a lot but would it have hurt as much if I hadn't used tens? I will never know. This is similar. Inosine raises uric acid levels and people with raised uric acid levels may - just may - find their PD progresses more slowly. I'm two years on from duagnosis. So far, I feel well and my symptoms are well controlled although it needs managing. But that might be the case if I hadn't taken Inosine. My point is, I felt it worth a punt. I definitely don't have gout.
Marc, we do look similar. I also take azilect and believe there is improvement. I will be talking to my Dr about Inosine but I am not sure the risk offsets the benefit based on preliminary research. The possibility for gout, etc concerns and before I commit to this I wondered about other opportunities. Have you looked at fusfoundation.org./? I only just learned about it.
Interesting. Still at the trial stage and reading between the lines I imagine its going to be most appropriate for people who are quite progressed with the disease... I'll keep an eye out for further developments though.
I will be meeting with my Dr in a few weeks and will see if I can get into the clinical trial. A little worried about gout / kidney stones as both run in my family. I will let you know what I learn Marc and thanks again!
Hello, I'm from the Psp side of things. You may be interested in this line of research.
Www.ethnomedicine.com
12/12 lakes/lochs/reservoirs in the uk tested positive for the toxin BMAA.
Oiur
michaeljfox.org/page.html?P...
This is a great idea. Join fox trail finder info here.
Also consider 23 and Me it was free for people with PD. Don't know now but you can check it out.
Best wishes
go to clinicaltrials.gov they have all trials listed and there are some going on from a company called OSMOTICA ..
Everyone has covered most everything. But I would strongly underscore John Pepper's advice about rigorous physical exercise and conscious movement.
To that I would add deep tissue massage (1-1/2 hour every 2 wks) staggered with 1 hour Feldencrais neuroplasticity sessions also every 2 weeks, for general muscle stimulation and movement neuron reprogramming, respectively. They have helped me "read" my body, identify which muscles are causing the impedence between my conscious brain and what I wish to move. For example, I am now able to put my finger on the specific muscle in my leg or arm where the impedence occurs to guide my massuse or Feldenrais physical therapist for maximum effect.
Google neuroplasticity and Feldencrais.
I do not take any PD prescription meds.
As the old saying goes,"If you don't move it, you're going to lose it!"
Good luck!
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