Hi All.

I was wondering if anyone was familiar with sites that offer lists of current PD research. I'm specifically curious in pre-clinical-trial research more akin to biology and physiology research than clinical trials of medications to treat symptoms.

I've been looking for a list similar to one available at clinicaltrials.gov, but I'm looking for a list that deals with PD theory rather than medication treatment trials.

Thanks for your help!

ufdigga

Thank you for the reply. Unfortunately Drs. would not try the crushed mirapex even after inserting a central line on 5/1/08 and they ceased nutrients thru central line 2 days after inserting it and then moved him to hospice 5/5/08 and my dear friend passed away in hospice 13 days later as food and water were withheld. Somehow I feel things were lacking in treatment. Linda

I WOULD LIKE TO KNOW IF HBOTHYPERBAERIC OXYGEN TREATMENTS CAN HELP PD SYMPTOMS. IS THERE ANY FIRM EVIDENCE THAT IT DOES, IN THE LONG RUN.
GEORGE

A friend has been hospitalized w/advanced PD. He has aspiration pneumonia and then developed C-DIFF. He cannot swallow food now. He's been in hospital about 12 days and on IV for food & nutrients. He formally had been on sinemet and mirapex. Currently they have him on liquid form of paracopa and zelapar. He is practically in a frozen state due to not having the Mirapex - but he is aware of most everything those most staff don't understand this and think he's out of it. Drs. say they can't crush Mirapex and give w/syringe by mouth because it loses its effacacy. I inquired about the Neuro Patch and they said they'd try it and then discovered yesterday that it was removed from pharmacies and cannot be obtained due to crystalizing of the patch it is not effective. They had hoped if he got enough PD meds to help him swallow then perhaps feeding could begin. He says he does not want a stomach tube and now the IV lines will have to be moved from arm to shoulder or neck. His vitals are good. They did try the nose tube several days ago, but were unable to get it down. The family, I believe, is at the point where soon they will have to decide to put him in hospice care and this does not sound good.
Any suggestions would be appreciated. Linda

Has anyone tried cutting Sinemet dose but taken it more frequently? For example, instead of taking 25/100 mg three time a day, taking one-half the pill 12.5/50 mg six times a day? Perhaps this "spread-out" dosing schedule would lessen the occurrence of dyskinesia and still effectively control symptoms.

Dear Dr Sanchez-Ramos,

Thank you very much for your advice on drug holiday. We have decided to NOT participate in that. I have more queries that I hope you can help with.

The symptoms are:
1. My dad experiences severe and painful rigidity during his off times.
2. His body is also very sensitive during off times to the point that he can't wear clothing.
2. During his on times, his postures is affected alot by dyskinesia. He often slips out of his seat, and when he sits his body leans to the side, almost horizontally.
3. His body temperature is out of whack. He feels the heat/cold more than others.

My questions are: Are they common and is there anything we can do to help him?

Thank you very much. I'd really value and appreciate your advice.

Sincerely,
Ina

Dear Dr.
My father was a patient of Dr. Lieberman in the 1980's in NY.
I am 60 years of age and have arm and hand tremors on the right side with movements of my right toes. No
other symptoms. I also have very serious arthritis of both knees for several years and I walk ver slow with a lot of pain.
Do you thinks this is Parkinson's?

simple question as in the topic I need answer for my research. I can't find it anywhere so please help me

Dear Dr.
I forgot to mention that with the toe movements there are feelings of electricity going through my foot and toes.

My husband is 62 diagnosed with Parkinson for over 14 years. He is on levodopa/carbidopa 100/25 2 tabs 4 times daily but rigidity and stiffness were never prime concerns. He has dystonia in his foot and antecollis and has two DBS stimulators GPI for the dystonia. He is on domptridone malcate, alertec and milodrine 5 mg. 2 tabs a day. in addition to ciprolex and clonazepam.

He main problem is weakness, fatique and low blood pressure and of course the antecollis.

I was wondering if his blood pressure may improve if he took less levodopa/carbidopa. His low blood pressure became very severe after an emergency gall bladder operation last year. Do you have any suggestions? He has excessive day time sleepiness and would like to be able to have less fatique and to be able to walk more than be is presently able without being overcome by exhaustion. Thanks for any help you can give.

trihexyphenidyl or artane is this drug safe after using it for 10 years?
I heard some bad things about artane. I take 2mg tablets 3 times a day. Please answer ... Thank you. FRED Herdegen

My father is 54 and was diagnosed with PD four years ago. Medication after medication continues to prove worthless for him, but doctors seem to be giving up and just loading him up with more pills that barely alleviate his symptoms. He had been complaining of chest pain for a while but neurologists and standard practitioners alike told him it was nothing. Then, last month, after undergoing a stress test, he was told he needed immediate heart surgery. My father has always been in shape, watches what he eats, and has never smoked a day in his life, yet he needed quadruple bypass surgery. The only correlation I see between his rapid and sudden diagnosis of heart disease are the Parkinson's medication he is on- Stalevo, Parcopa, and the patch before it was recalled. I have read some articles linking valvular degeneration and heart disease to certain PD medications and was wondering if anyone else with the disease has experienced heart problems since receiving treatment.

I've heard that Vitamin B complex "100" might be efficacious in PD. Is this true? If so, in what way do the B vitamins help symptoms? Are there any contraindications to taking the supplement?[/b]

I am diagnosed as a PD patient for 7 years. Until recently I took only selegiline and PK-merz madications. During the last 2 years my eye doctor observed an atrophic optic nerve concomitant with decreased field vision, while inner eye pressur is normal. Could these symptoms be related to a parkinson low dopamin induced low blood supply to the optic nerves?

I have had intense tremor in my right foot, mild movement initiation difficulty, shuffling upon awakening, and strong dystonia in my right foot for about 14 years. In the past 3 months the tremor is now also pronounced in my right hand and present in my left hand. I had been on a low dose of sinemet 25/100 3 times a day, but about 4 years ago I used artane in conjunction with sinemet and comtan and it was fabulous for my body-eliminated dyskinesias and thereby made me much much more stable and sure-footed----but it made me demented. I used artane for about two years, two years ago. Since I got off of artane my tremor is poorly controlled, and my dyskinesias were wild. I started falling and really having balance issues. I switched to taking half of my normal dosage every two hours instead of a whole dose every four hours. Spacing the medication reduced the dyskinesia but now I have developed the aforementioned tremor in my right and sometimes left hand in addition to foot tremor --the progression was counterclockwise from right foot to right hand to left hand w left foot relatively unaffected.

I long for something like artane. I know that a new "antidyskinetic" drug is in Phase III trials with a European company. But what is there for now???

As is indicated by my name, I have incontinence. I have completed 8 months of pelvic floor work but I am still having frequency, urgency and accidents. I looked up Enablex --I was hoping that because it is a muscarinic antagonist that it might be a milder version of artane. But artane is an M1 and M4 antagonist and the drug in Enablex is an M3 antagonist. But is it worth trying for my incontinence with the hope of diminishing the dyskinesia?

Also, what attempts have been made to use the nicotine patch for both neuroprotection and enhancement of LDOPA? I would like to try it as a means of lowering my dose of LDOPA to reduce dyslkinesia but be at a higher level of effectiveness to treat my tremor.

Dear Dr,

I have been a parkinson patient for 18 years. My medications are as follows: 7 a.m. 2 sinemet and 1 mirapex .75
11a..m. 2 sinemet and 1 amantadine 100 mg
3 p.m. 2 sinemet snd 1 mirapex .75
7 p.m. 1sinemet all of the sinemet are 25/100

My problem is that I have a great deal of troublle in walking in the late afternoon and find it very difficult to deal with aan evening away from home becausse of my walking I do use a cane.

Have you any suggestiions in medications etc. I can make to help my problem?

Thank you.

Hi,

What is your opinion regarding drug holiday?
My dad is offered one, but the advice that he got are conflicting.

Thank you very much,
Ina

Researchers such as P.M. Carvey at Rush in Chicago and Bin Liu at NIH in North Carolina have made a good case for prenatal exposure to bacterial endotoxins such as lipopolysaccharide LPS as a primary causal factor in PD. The priming of the immune system and the disruption of the endocrine system's hypothalamus-pituitary-adrenal axis HPAA theoretically sets up a lifetime inflammatory reaction due to increased sensitivity to further LPS exposure on the part of the microglia leading to degeneration. While I think the HPAA involvement needs a bigger role, the LPS portion of the hypothesis makes sense.

It also provides a possible explanation for the dairy products link. Dairy cattle are prone to mastitis which is caused by a gram-negative bacteria which produces LPS when it dies. Dairymen routinely rely on antibiotics to control the problem and pasteurization ensures that the bacteria remain on the farm.

Unfortunately, LPS present in the milk is not readily destroyed by pasteurization and remains in the milk even though the bacteria are long gone. Concentrations would vary from day to day but there would be an overall exposure. Not everyone would have the sensitivity and even that might vary. And women gain a level of protection due to their hormonal make up.

It would be interesting to compare the spread of commercial dairy production over the years with PD numbers.

My husband is constantly suffering with constipation and gas. He takes everything the doctors are suggesting but he is suffering constantly.
He takes Zoloft for depression, and thyroid and sinemet along with quite a few supplements.
paula

what is the effectiveness of fish oil on parkinsons?

Greetings

After 2 years with a PD diagnosis, my dr. now says I have MSA. I take 5 doses of Stalevo, Azilect, 1/2 Sinemet daily. Then there is Amitiza, Vescare for those problems. I have increaing swelling in my knees and ankles. I sleep with legs elevated but still wake with swelling. Is it the combination of meds. or should I seek another doctor? Needless to say I am scared I am on a very slipper slope. I want to make it to my daughter's
wedding in Feb. 09. Do I have a chance? Do you have suggestions for me?

Dear Dr,
My 58 year old husband was diagnosed with Parkinsons in 2003. He is currently on
Sinemet 250mg/25mg, 2 tabs 3x daily
Cabaser4mg just increased from 2mg this week 1 tab in morning
Comtan 200mg 1 tab 3x daily
The problem is that for several months now he has started falling badly about an hour after his morning meds, this lasts for about an hour, then he steadily recovers.When he has his meds at noon he starts stumbling and falling about 2 and a half hours later which also lasts about an hour and again after his evening meds about 2 hours after.
Hope you can shed some light on this for us.

In 2003, I was screened for manganese by Dr. P. Neusedia, and the results were that I had manganese poisoning.

I am experiencing drooling, slurred speech, dizziness, loss of balance, and severe headaches...Would these symptoms be because of this manganese poisoning?

I have seen a Dr. that diagnosed me with having 3 symptoms related to Manganese, which are tremors, sleep disorder and mood swings.

Thanks
Lee

Has anyone considered color preference as a tool in early detection of PD?

In reading about the oft-reported effects of blue light on PD symptoms, I began to think that it might be interesting to see if there was anything unusual about PWP's favorite colors. As best I could determine, the general population chooses blue about 40%.

Doing an informal poll among about 30 PWP the response for blue was roughly double that.

This makes sense if blue light the most energetic part of the spectrum and sky blue being an evolutionary benchmark stimulates brain chemistry in such a way as to release dopamine. The positive reinforcement would tend to make one prefer the stimulus.

While not definitive in and of itself, it could be of value and you can't beat the cost.
Rick Everett
parkins1@parkinsonsonline.org

Has anyone had the experience of stage 4 bed sores with the person with Parkinsons.
Have been fighting it for over a year with weekly medical visits and am using an alternating pressure mattress.
Any ideas ,suggestions?
Thanks
Tracker

I have recentlylast 5 years developed an incredible addiction to sweets. I have to force myself to eat anything else. My teeth are rotting and my size is growing.

It was not too bad when I had a high level of dyslexia. The constant movement absorbed many calories. But now that I have that monkey off my back, my weight has gone up and up.

Is that craving for sweets a function of the disease or rather a side effect of the medicine? I take Sinemet, Amantadine MIRAPEX, and Nu pro.

Hi,

I'm new to the site. I have a question regarding Hallucinations. I have just recently started to have hallucinations this past week. . . small creatures running around and figures of people. Is this caused by the parkinsons or by the parkinson's medication.

Ron

The right leg is weaker than the left which impedes mobility.
Can anything be done to strengthen it?
Is exercise or therapy the only means or are there meds that can help?
Presently, the patient is only on sinemet.
Thank you

George

I have been on Stalevo for a year now and it did help for about 8 months but now I noticed a wearing off period. My Dr has added azilect 1.0 mg once a day to my 50 mgs Stalevo4 times a day. It seems to be helping a little but where do we go from here if this also has a wearing off period.

h
HOW SHOULD AND IF TO TAKE ARICEPT WITH PARKENSON'S?

I have taken Stalevo for 1 1/2 yr.; 150 mg 3/per day for one year, then after I noticed side effects in face and tongue and voice, the dr. lowered the dose to 100mg 3/per day. I still have the side effects, feel like I am moving more slowly; but the dr. said I have to continue with the Stalevo because if I start other meds; they will loose effectiveness and I won't have any other options for other meds. Oh, I was on Requip before that, but it made me extremely drowsy, and he stopped it. I don't like the facial tics and voice and tongue swallowing side effects. Another opinion? Thanks, Chuck

Dear Dr. Lieberman,

My dad is in the advanced stage PD. During his "off" time, he often has a lot of gas in his stomach, which is very difficult to expel. This, in turn, makes his off times much worse and unbearable, and his body becomes very rigid.
Is the mechanism of his body affected by PD? Why is it that during "on" time the gas didn't seem to bother him, but during the off times it becomes quite a big problem? What can he do to get some relieve? We believe that if this is corrected, his off times would greatly improve.

Thank you very much.
Ina

My mother was diagnosed with Parkinson's ~9 years ago and we have had a plethora of problems over the years, most of which has led us to believe she has Lewy Bodies extreme cognitive difficulty, hallucinations, sensitivity to tranquilizers, combative nature, etc.. She is now in advanced stages and currently suffering from constant agitation and depression. She is on and has tried dozens of medications and currently in-patient for medical re-evaluation as her nursing facility is having difficulty with her psychoses and depression she is 55 years old. She is in advanced stages and has only limited "on" periods for ~1hr on a good day where you can sometimes hear what she is saying and sometimes it makes sense. Otherwise, she is incontinent, confused, and unable to walk.

The physician is recommending ECT which scares me substantially. I have tried to read all I can on the therapy and recognize this is an accepted therapy for depression and Parkinson's as it may increase dopamine receptors. My concerns lie in my understanding of the use of ECT when dementia is prominent as it is. From what I've read this is a difficult treatment for the patient and particularly if dementia is pre-existing there will be substantial memory loss and increased confusion as well as pointed delirium. Additionally, remission seems to be quick with pre-existing dementia and regular treatments would be needed.

Assuming this procedure worked, my mother may be less agitated and depressed for a short period of time in between treatment but treatments would be accompanied by an equal amount of time in delirium and pain. Thus, I'm having a great deal of difficulty accepting this as a positive treatment for someone in such late stages with substantial dementia. She also has osteoporosis which from what I've read would make seizures more difficult and the likelihood of breaking bones during the treatment greater. However, because this is the doctor's request and this is a doctor she has not worked with before and is assuming Parkinson's diagnosis not LBD as he is with the nursing facility we are getting a lot of pressure to either undergo ECT or sedate mom continuously which may result in feeding tube needs. If we do not choose one of these options we may lose support of this nursing home which we like and is the 6th nursing home mom has been in under 2yrs due to her sometimes combative nature.

My question is would ECT really improve the quality of life for any substantial time if she indeed does have LBD. Although my mother is advanced in this disease, she was able to spend Thanksgiving and Christmas away from the nursing facility and even smiled and talked for part of her visits. Thus, I do not think "final options" are necessarily where we're at.

Any input would be much appreciated! Over the course of my mother's disease we have come to Dr. Lieberman's Q&A regularly and find the information extremely helpful. It is a wonderful service in a very scary world associated with these diseases. Thank you.

I am new and do not know exactly how this works... but here is my question.

I am a 50 year old woman. I have had Parkinson's since I was 39.

I am on Mirapex, 3 mg per day
Amantadine
Sinemet 2 25/100 4 x a day

I had to have a root canal last week and the doctor gave me Penicillin VK 5000 tabs to take .... one every six hours.

I have noticed that I walk almost like I don't have parkinson's. My stiffness is almost non existent. I still have some shaking, but I can't believe how fluid I feel.

Have you heard of this happening before?

And am I asking a doctor this or am I asking members?

What are the latest results with the use of COQ10 in PD?

My wife diagnosed '96 has been mildly short of breath for years. Lately she is congested all the time beyond what a cold would account for, and she wheezes with every breath. Her breathing is shallow, and she coughs easily. Is this a Parkinson's symptom having to do with weakened muscles not allowing her to clear her throat properly? Is there anything we can do to clear her airways?

Thanks, Tom

My husband is having problems finding the narrow window of the right amount of meds. He has either tremor, from not enough, or dyskanesia, & hyper from too much.
I am desparate to find out more information on dbs surgery. When is a patient a candidate? Does Ins. pay? If not what is the out of pocket cost? What is the success rate, etc.

Dear Dr. Lieberman,

I've noticed that my husband has a severe tremor it seems when he eats sweets. Could it be that the Seniment weakens during this time? Also, when we increase seniment 1/2 mg to help with the tremors that last a few hrs sometimes, he has uncontrollable movements and fells like swaying his body, and also very hyper active. When we drop a half mg he goes back to having the tremors, that are not :?: normal PD tremor.. He also takes 10 mg requip per day, and Stelevo 150 mg 6 x daily, along with 4.5 - tablets 25/100 Seniment. We can't seem to regulate and find a happy medium

Bill has MSA or Parkinsonism. He's in the hospital now & just got a feeding tube because he is apirating. Is this the end stage & what can I expect to deal with? Is there anything to read about it?
He did come see you in Miami a few years ago. We certainly respect your opinion.
Judy

Dear Dr.Ramos

Am Dr.Louai Tabbakh from Syria Meddle East.
Firstly congratulations for your new position.
Secondly: kindly I want to know the indications and contraindications for sub thalamic nucleus stimulation in Parkinson disease patient and also the percentage of success and the prognosis of the surgery.

Best regards and thanks so much

My fiance who has had Parkinson's for about 12 years is currently having problems adjusting his medications. While he is doing this under his PD doctor's supervision he is experiencing some frightening side affects such as hallucinations, drastic weight loss and severe body temperature changes and more.

He feels that while he is working out his meds he would feel more comfortable if he were in a nursing home or some such facility where he could be monitored by professionals such as nutritionists, Parkinson's doctors etc.

We have not been able to find such a facility. Does anyone know of such a facility. Money is not a problem and my fiance is prepared to travel anywhere.

I was wondering if you might tell me if you think that the meds my Mom is taking are causing her very vivid hallucinations? She was diagnosed with PD 5 years ago and is now 81. The meds seem to do a good job controlling her tremors, but in the last month her confusion and hallucinations have been very deeply disturbing to all of us. She even tries to leave her home of 50 years "To go home".

Here is a list of her meds:

Paroxetine 10mg Paxil 1 per day Neurologist

Carb/Levo 10-100 M Sinemet 2 per day Neurologist Taking for about 2 years

Aricept 5mg 1 per day NeurologistStarted 2 weeks ago

Synthroid 0.075mg 1 per day Primary Care Physician [PCP} [Thyroid]

Ranitidine 300mg 1 per day PCP [Gerd]

Oxybutynin 5mg ER Ditropan 1 per day PCP [Bladder Control]

Lovastatin 40mg Lipitor 1 per day PCP

Felodipine ER 10?mg 1 per day PCP

Benazipril 40mg 1 per day or 2 per day as needed PCP

Nitrofurantoin Mono 100MGRX Macrobid 1 per day Urologist



Thanking you so much! Any insight would be gratefully received.

A Nov. 8, 2007 article in the Sun Sentinel reports that "researchers at the St. Louis University School of Medicine have discovered the key brain chemical that causes Parkinson's disease"...Dopal.

How can current Parkinson's patients benefit from this finding and if so when?

My husband gets stuck while trying to turn over at night. The effort takes tremendous energy, and he emits loud noises, like a motor running. The whole movement seems obsessive. He shakes the whole bed, and usually is not successful in the end. Of late he is also extremely tired, and can sleep almost the whole day. Is any of this behavior caused from medication side effects, or just from the desease itself? Also, would an increase in his antidepressant help alleviate his desire to sleep so much?

Dr. Lieberman:
Started sinemet 25/100 mg with half tablet for a week and adding half the second week working towards 3 tablets daaily. However noticed at just one tablet a day, increased tremor, which was previously confined to one side, as well as mental confusion. Would this indicate pd diagnosis should be re-evaluated. Thank you!

Dear Dr Lieberman:

Mother takes a low dose of Seroquel for confusion and agitation, which has been working fairly well but still has confusion. She has started getting pretty confused again and the neurologist put her on Aricept because she has the dementia with her Parkinsons. She gets up in the morning and goes back to bed and sleeps to about 3:00 in the afternoon. Says she feels better when she is lying down. After 3:00 she is her old self. Should she be taking both Seroquel and Aricept together. Wondering if she was on too much medicine. Also would Excelon be a better choice for her since it is for Parkinson dementia. Do patients with dementia tend to want to stay in the bed more. How long does it take Aricept to take effect? She has been on it about three weeks.

Thanks for everything you do.

Susan OQuinn

Dear Dr,

I am about to begin azilect, and also have a great deal of insomnia and depression.

is theere any antidepressant that can safely be used with azilect?

Thank you for your help.

Dear Dr. Lieberman,

You recommended a doctor in Memphis, which we took her to see. He did't act like he wanted to see her anymore. I felt like that was a research hospital and she was beyond the age they were using the new drugs on. Do you know any good PD doctors in the Birmingham area or Jackson, Mississippi area. We would like for our mother to see a specialist. Doctor in Tupelo, Mississippi isn't helping too much with her medicine. She is on Seroquel, which has been added in the mornings and makes her sleep all day. She is still confused taking it. We want her to have some quality of life. If you know someone in the surrounding Tupelo, Mississippi area please let us know.

Thank you very much,

Susan O'Quinn

Dear PRF,

My father has been taking Selegiline to enhance the effectiveness of his Carbidopa/Levadopa medication for a few years. Lately his Parkinsons symptoms are getting worse, and his doctor suggested replacing his Selegiline with Rasagiline as one experiment.

The warnings that come with the Rasagiline state that Dad must be off of the Selegiline for 14 days before beginning the Rasagiline. Dad's doctor initially said not to worry about this warning and just switch medications, but when pressed about the warnings, he said that to be conservative, we could wait the two weeks. We pressed him further, but he didn't really answer our questions with clarity.

So, three questions:
1. What is the reason for waiting?
2. How risky is it to not wait and simply switch medications one morning?
3. If we wait, will his being off both medications for 14 days impact his symptoms?

Thank you.

I was diagnosed with Parkinsons four years ago. I am a 67 year old male who loves golf. My Parkinson symptoms presently are left side tremor of mainly the left arm and to a lesser extent the left leg. I am taking .5mg. Mirapex tid and 5mg.Selegeline bid. Recently the tremors have increased to the extent that it keeps me awake at night if sleep is interupted. Coincidentally my golf game has deteriorated. The swing is producing disastrous results although it feel the same as it did four years ago. Is it possible that the effects of Parkinsons such as I have can alter muscular coordination or should I just see a golf professional to analyze the swing? Perhaps it is a combination of both.

For a week now I have been having terrible lower front gum/teeth pain and have been to the dentist and he can't seem to find anything wrong. The intensity of the pain varies from mild to unbearable. Has anybody ever had anything like this and do you think it's from the PD? Thank you in advance for any help I can get.

ekw513

My husband, 59, has had Parkinson's for 10 years. He has developed sexual compulsions, so he has stopped Mirapex which he had been taking for approx 6 years. Is there a different agonist that we could add to his Stalevo 150 mg eve 3 hours? He is experiencing much freezing. He had DBS 15 months ago without terrific results. He is also scheduled for a back fusion surgery - the 5th in four years - and is in a lot of pain. The pain worsens when he is struggling to walk. Since he has stopped taking Mirapex, he is finally able to sleep through the night. Thank you for any help you can give us with meds.

Do you have any reccomendations for dealing with constipation?

Dear Dr. Lieberman,

Have their been any studies on Parkinson patients when they eat sweets if it makes them agitated and a little confus