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Ask a Doctor Your Questions about Parkinson's Disease
 

Q&A Sessions: Ask Your Questions

Alice Chen-Plotkin, MD will be answering your questions about Parkinson's disease. Please submit your question below.

Harvey asks:
My brother is taking carbidopa/levodopa for Parkinsons disease. However, he has not been 100% diagnosed for this condition. Is this the correct medication?

Dr. Chen-Plotkin responds:
Carbidopa/levodopa is the most effective medication for Parkinson's and it is also helpful for other causes of parkinsonism. The best way to know if the medication is correct for your brother is to see if it's helping his symptoms. Since we know that the medication does not change the course of the disease (i.e. make it progress faster or slower) the reason to take it is if it helps symptoms.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Nana1 asks:
I just heard about a study showing that ibuprofen could help prevent Parkinson's disease. Would it be helpful for people who already have Parkinson's?

Dr. Chen-Plotkin responds:
There's no good evidence that ibuprofen is helpful in treating Parkinson's disease itself. However, often people with Parkinson's have "aches and pains" due to the fact that the Parkinson's may cause them to hold their bodies in positions that are awkward. Ibuprofen (and other medications like it) can be helpful in this situation.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Jim asks:
All of a sudden I developed a severe pain/pull in my lower right abdomen which prohibits me from standing erect unless I use a walker.

Dr. Chen-Plotkin responds:
I am assuming you have Parkinson's disease. However, the fact that this "pull" happened suddenly makes me suspect that it may not be related to the Parkinson’s disease. Ask your primary care doctor what they think after they have examined you.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Maureen asks:
My dad was diagnosed with Parkinson's disease ten years ago. He's managed well until four years ago when he developed hallucinations as a result of Mirapex. He's gone through nine different medications for Parkinson's and now he's not responding in the movement department. He's become almost immobile. His doctor told him nothing more can be done.

Do you have any suggestions? I'm not his primary caregiver so don't know his medication schedule at the moment. I believe he's taking anti-psychotic drugs to help with Parkinson's dementia and illusions.

Dr. Chen-Plotkin responds:
The difficulty you are describing often occurs later in the course of Parkinson’s disease. There are few possibilities. First, it is possible that your father has significant dementia at this point which will limit his ability to take Parkinson's medications (since most of them will worsen the hallucinations) and his ability to undergo options like deep brain stimulation surgery.

Second, it is possible that the hallucinations were caused primarily by the Mirapex and he may still be able to tolerate Sinemet or other treatment options. It's hard to tell what is the case without seeing him and knowing his whole history. However, on a practical level, if you have doubts about what your father's doctor is saying, you could always ask for a second opinion.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Marikanikou asks:
I'm having dental work done such as fillings, root canals and caps. I just started four days ago taking Azilect on top of other Parkinson's disease medications such as levadopa, Requip and Comtan. I am also on medications like lipotor, prilosec, blood pressure medicine, iron vitamins, and vitamins D and C. Should I stop the medications for Parkinson's until I finish with my dental work?

Dr. Chen-Plotkin responds:
Ask your Parkinson's disease doctor and your dentist what they think. This depends in some part on what kind of anesthesia and other medications you are expected to be on for the dental work. I suspect that the Azilect and the Comtan may need to be held for a period surrounding the surgery, but your personal doctors can give you a better idea.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Ellen asks:
This is a follow up to my last question. If I've had an MRI, been checked for arthritis and had physical therapy, but the shoulder pain still persists, what else might help? Does my medicine need to be changed?

Dr. Chen-Plotkin responds:
This is a tough question without actually seeing you in person. I would advise asking your Parkinson's disease doctor and your primary care doctor what they think.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Patti asks:
A person recently diagnosed with Parkinson's disease was referred for various therapy services. His doctor prescribed Carbidopa-Levo 25-100 Tab TEV and he was told this was a fast acting drug. Is there an actual estimated time frame for relief from tremors? The time frame I am being told is symptom relief within hours. Thanks for your time.

Dr. Chen-Plotkin responds:
Usually the medication "kicks in" within 30-60 minutes and then lasts for hours. What we often find, though, is that it is more effective at relieving the other Parkinson's symptoms (slowness of movement, shuffling walking, etc.) than it is for tremor, although there is usually some effect on tremor as well.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

K asks:
My mother-in-law had open heart surgery and she is very weak and unable to walk, stand, or sit up for very long. Could her Parkinson's disease be causing her extra weakness in her muscles?

Dr. Chen-Plotkin responds:
Often we find that Parkinson's disease patients might have a slightly tougher time after a major surgery than people without Parkinson's, and it is probably for a combination of reasons.

First, the inability to move around much after the surgery may make them feel stiffer. Second, the medications given around the time of the surgery may interact somewhat with the Parkinson's medication or with the system in general. Finally — and this is the part that you can try to fix — during the hospitalization, people are often not given their Parkinson's medications right on time. This can result in a lot of "off" time.

What I frequently suggest for my own patients is that they ask whether they or a family member can be in charge of just the Parkinson's medications (the other medications are still brought by the nurses, etc.). That way you can be sure that the medications are getting into the system on time. Good luck!

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Ellen asks:
I was diagnosed a year and a half ago with mild Parkinson's disease. I am on 8 mg of Requip, lmg Azilect, and 1200 mg of Requip. I am seeing a physical therapist for shoulder pain, but nothing helps. Do you think I need more or a different kind of medication or something else?

Dr. Chen-Plotkin responds:
Pain in Parkinson's disease is an evolving area. Some think that the Parkinson's process itself causes pain, and others think that the abnormal ways that Parkinson’s causes you to hold your body causes the pain. In any case, you might want to have your shoulder evaluated for non-Parkinson's causes of pain (like arthritis in case that may lead to a good answer.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Debra asks:
This is complicated and I hope you can help. I was diagnosed with Parkinson's disease in June 2006. My main symptom is resting tremor. I'm 56 years old with a history of migraines, and the first onset was an aura with left side weakness, numbness and tingling on my face and sometimes the hands and leg, nausea and a strange light sensation.

I'm finding that I don't seem to be doing very well with any of the Parkinson's medications that I have been given. Mirapex, Stalevo and Azilect all caused nausea, vomiting, headaches, blurred vision, stiffness and other serious side effects. I have been on Carbodopa 25 mg / Levodopa 100 mg for a little over a year. I have been in and out of the hospital since April 2008 due to stroke-like symptoms on the left side of my body. A test confirmed no stroke, but I was told after having an MRI and CT scan that it seems I had two mini strokes which showed to be old.

Last week, I was admitted again to the hospital this time for severe dizziness and stroke-like symptoms again. I was in pretty bad shape and I was treated for a possible stroke with blood thinner medications that I can't recall off hand. All kinds of tests were done and I was again told that I didn't have a stoke, but I did have the symptoms. I was seen by a neurologist who seemed to think I have what is called "complicated migraine." He explained that this type of migraine can mimic a stroke. This is out of character for the migraines I have had all my life.

I'm wondering if it could be a possiblity that I don't have Parkinson's, because I don't have the resting tremors any more, no slowness or difficulty walking, or the slight shuffle in my left leg. It used to be that I would get real stiff and I would feel pain from sitting and I don't experience any of those symptoms any more. In fact, I'm walking well, no more pain or stiffness. I just have the dizziness, eye pain and sometimes a slight headache.

Could these just be symptoms from the Parkinson's disease medications that caused the Parkinson's-like symptoms? When I was first diagnosed, could that have been from maybe stroke-like symptoms back then since that is what occurred? I am to see my neurologist who specializes in movement disorders and Parkinson's in three weeks which is why I'm writing because I am anxious to know something. Thank you so much for your help.

Dr. Chen-Plotkin responds:
It's hard to diagnose you without seeing you. However, the simplest way to explain what you have described is that you have Parkinson's disease, and that you have had a good response to Sinemet (certainly, many patients can get almost total symptom alleviation with medication). As for the stroke-like symptoms and complicated migraine, it may be worth asking your movement disorders doctor whether you should also be evaluated at least once by a stroke doctor to make sure that everything that's possible to prevent strokes is being done in your situation.

It is true that there are such things as complicated migraines (where a person can have symptoms similar to strokes but not have a stroke on MRI), and that you could be developing complicated migraines now after having had "simple" migraines for years. However, it's best to be cautious and to make sure that everything you could be doing to prevent strokes is being done.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Nana1 asks:
I've been diagnosed with Parkinson's disease for 16 years. In 2003, I fell and fractured my left elbow. The orthopaedic doctor said I should just wear a protective sling and start with physical therapy, which I did. Another fall about five weeks later resulted in a bone fragment coming loose. I needed to replace the radial head, which I did. I've never experienced pain like I had after the surgery.

The doctors seem to think that the Parkinson's disease was pulling the elbow out of the joint with major dystonia. I still have no relief after two more surgeries. Each time, the left arm would turn almost completely over. Is there anything that I can do to relieve this pain and have the use of my left arm again, even if only a little?

Dr. Chen-Plotkin responds:
It is possible that there is some element of dystonia that keeps your elbow from healing properly. One thing you can try is asking your neurologist whether there is something to do specifically for the dystonia. In some cases, if the dystonia is localized, it might be amenable to a treatment like botulinum toxin injection. Good luck.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Ken asks:
I was diagnosed with Parkinson's disease approximately five years ago. Since then, deep brain stimulation has been performed on me with great success.

However, my question is on the cause of Parkinson's disease. There is no family history of Parkinson's. Is there a study taking place on the relationship of Parkinson’s disease and exposure to jet fuel?

When I was in the Navy back in the 1970's, I performed many hours inside jet fuel cells, thus being exposed to fuel without proper personal protection equipment. Not only that, but when stationed on an air craft carrier the drinking water would always have jet fuel odor when drinking or showering. I would like to find out if there is some sort of relationship of PD and jet fuel exposure.

Dr. Chen-Plotkin responds:
I do not think anyone has established a relationship between exposure to jet fuel and Parkinson's disease. There have been some good studies of environmental exposures that seem to increase one's risk (at a population level) of developing Parkinson's. The most suspicious exposures seem to be to various kinds of pesticides. Unfortunately, for most people, no clear cause of their Parkinson's disease is ever found.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Gang asks:
My friend was diagnosed with Parkison's disease eight months ago. He has been taking medicine since then and the symptoms were minor until two weeks ago.

He keeps talking in his sleep. The somniloquy can always last up to 5-6 hours without interruption and it is also accompanied by abnormal body movement. When he is waken up by his wife he becomes normal, but he cannot remember what he has done.

Before he was diagnosed with Parkinson's disease, he had a long history of insomnia. Do these symptoms mean the deterioration of this disease? Are his behaviors normal to patients with Parkinson's disease? I consulted some experts and they do not have an explanation for this. What should we do to help him? Thanks so much.

Dr. Chen-Plotkin responds:
In recent years, it has become increasingly clear that REM behavior disorder may be a precursor condition to Parkinson's disease (meaning, that people have symptoms of the sleep disorder before they show symptoms of Parkinson's).

Usually, when people sleep, an area at the base of the brain turns the spinal cord off, so that the person does not physically act out dreams. However, if there is a malfunction in this "on/off switch," a person may move abnormally and appear to be physically acting out their dreams. It appears that the same disease process that affects the areas of the brain that help a person move normally during the day may also affect this "on/off switch," thus resulting in abnormal movements while dreaming.

To establish whether your friend has REM behavior disorder (common in Parkinson’s disease patients), he can have a sleep study at Penn Medicine. If REM behavior disorder is diagnosed, then some medications can partially suppress the dreaming phase of sleep.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

PJ asks:
Can degenerative disc disease (lumbar and cervical) cause symptoms that mimc Parkinson's disease?

Dr. Chen-Plotkin responds:
In general, the answer is no. Parkinson's disease symptoms such as bradykinesia (slowness of movement) and tremor are rarely caused by degenerative disc disease. Parkinson's symptoms such as increased tone (stiffness, resistance to movement) may be caused by disc disease, but usually the type of stiffness in Parkinson's disease can be differentiated from the type of stiffness from disc disease.

Many people, after the age of 50, will have degenerative disc disease as seen on a head MRI. However, unless these people have symptoms that can be linked to the particular levels of the spine where the disc disease is, it may be that this MRI finding is a red herring. If you are in doubt, see a neurologist, who should be able to help you figure out what symptoms are due to what process.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Nana1 asks:
When I first started with a neurologist at a large teaching hospital, the doctors I had were great. Now after 16 years and two deep brain stimulation surgeries, my original doctors have moved on. I do not like the doctors I have now at all. Please tell me what I should do?

Dr. Chen-Plotkin responds:
As you probably know from your experiences, it's important that there is good chemistry between patients and their doctors, especially with a long-term illness like Parkinson's disease, where the relationship lasts for years.

The other thing to realize is that early on in Parkinson's, the management is not as difficult. However, later in the disease, many doctors, even very good ones, start to run out of good options and following with a doctor who has known you for a while and knows your own reactions to medications is often helpful.

If I were you, I would ask myself whether the frustration you are feeling is due to the fact that your illness is now harder to manage or if it is indeed due to a bad fit between you and your doctor. If you truly don't get along with your doctor, then you can always ask to see someone else for a second opinion.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Mary Lou asks:
My husband has had Parkinson's disease for eight years now. In the past few months, he has been consuming an enormous amount of sugar. He eats anything sweet rather than nutritional foods. He has a very difficult time making a bowel movement. He also spends a whole lot of time sleeping, even sitting up.

I'm really worried that he does not open up to his doctor now that he feels he is progressively getting worse. I have tried to explain to him how important a good diet is when you have Parkinson's disease. Could his difficulties be from too much sugar? I'm trying to do my very best for him, but he seems to not care about his health as much as I do. If you have any suggestions for me I would greatly appreciate it.

I am also dealing with our 10 year-old and Asperger syndrome and sometimes things get very heavy on my shoulders, but I would like to have some good ideas as to how to help my husband. Thank you very much.

Dr. Chen-Plotkin responds:
That sounds like a lot to handle! I am not sure whether your husband's tendency to eat sugary foods are causing him difficulty, but certainly in the long run this is not a good nutritional course for anyone, with Parkinson's disease or not. For the constipation (very common in Parkinson's), miralax (over the counter) is often very helpful.

In addition, it sounds like both you and your husband may benefit from joining a Parkinson's disease support group. It's a good way to compare notes on experiences both for the patient and the spouse. If your husband is a patient in Penn Medicine's Parkinson's Disease & Movement Disorders Center, ask your neurologist at your next clinic visit. There are a number of educational and support services that we can help you to access.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Paddy asks:
My brother has had balance problems for about one year. He has had a twitch in his eye for a few years. He does not have any tremors, but he sometimes misses an object when he reaches for it.

His primary care doctor had him see a neurologist and he has had many tests. The neurologist said he has a mild case of Parkinson's disease. He lives in New Jersey and I would like to have him go to Penn Medicine for a better diagnosis and, hopefully, treatment. What is our best course of action? Who at Penn Medicine should we contact?

Dr. Chen-Plotkin responds:
At Penn Medicine's Parkinson's Disease and Movement Disorders Center, we see patients for second opinions about Parkinson's disease frequently. The best way to go about it would be to call 1-800-789-PENN (7366) and ask which of the movement disorders doctors has the next available new patient appointment. You may also need to get a referral from your primary care doctor. Good luck.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Ann asks:
My brother has been diagnosed with Parkison's disease and multiple system atrophy / Shy-Drager syndrome (the latter has not been confirmed by any tests). However, I found out that a 123I-MIBG scan would distinguish between Parkinson's and orthostatic hypotension.

His blood pressure is out of control (up/down), and he is taking medicine for this issue. He has horrible swelling, he has tremendous back spasms, pain in shoulders and neck, his balance is off, he falls and passes out, and he has not had any luck with Parkinson's medications (they make symptoms worse).

I could continue on with all the symptoms, but the bottom line is that he is getting no relief from these symptoms. He has been seeing a neurologist at another institution for movement disorders for the past six months, but he is not getting any better. Can you help/offer us any suggestions on what to do? Should he be seen at Penn Medicine's Parkinson's Disease and Movement Disorders Center for more specific help with this disease?

Dr. Chen-Plotkin responds:
It does sound like your brother may have multiple system atrophy (and the variant formerly called Shy-Drager Syndrome). The key features that distinguish this from garden-variety Parkinson's disease are a lack of response to Parkinson's medications and severe fluctuations in blood pressure. It's very difficult to handle, even for very experienced doctors, and the truth is that this disease is something we still don't really know how to treat.

That said, I would give the current doctor a little longer to see how it goes. The reason is that, especially in cases like this, it takes some time for a doctor to learn the individual responses of his/her patient to medication changes. And switching doctors means that you may lose some of the knowledge your current doctor has gained with your brother over the last six months. You can ask, however, that your doctor give you a sense of the game plan going forward, so that you can understand why things are being done. Take care and good luck.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Wendy asks:
My grandfather is in late stage Parkinson's disease. He has suffered from hallucinations for years and lately severe confusion. Just in the last couple weeks he has become severely agitated and even violent. The violence is usually asociated with paranoia when he is trying to run away in fear of someone harming him. He has even grabbed a nurses arm and bruised it during an episode. He becomes unusually strong during these episodes.

The nurses say this recent behavior doesn't seem normal for Parkinson's disease. Have you heard of Parkinson's patients having this severity of confusion/paranoia in which they become violent, even with family members, or is this more likely related to a medication imbalance?

Dr. Chen-Plotkin responds:
Problems with confusion/paranoia are not uncommon in people who have had Parkinson's disease for a long time, likely because the same neurodegenerative process that begins in a local way and affects a person's ability to move then spreads more widely in the brain and can affect a person's ability to think clearly. The difficulty is that at this stage some of the medications that help the patient move (which add dopamine to the system) also worsen the confusion.

You should ask your grandfather's doctor if he or she thinks that reducing the Parkinson's disease medication or adding a medication for hallucinations would help. The other thing to realize is that when Parkinson's patients start to have the thinking problems (cognitive decline or dementia), then little things like a urinary tract infection or change of routine/surroundings can severely worsen the confusion.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Barbara asks:
My mother was diagnosed with Parkinson's 13 years ago. After trying different medications and many combinations over the years, she is currently taking Carbidopa/Levo 25/100 four times a day along with Comtan four times a day. Her last dose of the day is at 6 pm.

Since she does not sleep well during the night, she is often up, going to the bathroom, cleaning dinner dishes, in and out of bed, etc. After her first dose of medications at 6 am, everything changes. She can barely function at all. Shaking dramatically increases. Mobility is very limited.

Why is this happening? She watches her protein intake and only eats two hours before or after her medications. It is like the medications are poison to her. Is the 25/100 Carbidopa/Levo too much?

Dr. Chen-Plotkin responds:
It sounds like she may be experiencing motor fluctuations which often happen after 10+ years of disease. What this means is that the right "zone" of dopamine--where a patient is neither off (unable to move) nor dyskinetic (many extra movements)--becomes very narrow, and a regimen of medication that has been working well may not work as well any more.

It's hard to tell without seeing your mother whether the shaking in the morning is a Parkinsonian tremor or whether it's dyskinesia--this would be the key question to sort out with the neurologist, since that will determine which way to go with the medications.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

TPF asks:
I have recently developed a "pill rolling" tremor in both hands. Over the past two years, I have had tongue thrusting movements, which I attributed to tardive dyskensia. I am now having some balance problems and trouble with my coordination. I have no muscular rigidity. My hands ache from the constant movement and I have developed numerous sores in and around my mouth from the tongue thrusting.

I am a 57 year-old female who has been on many different medications over the years. Some of the psych medications have caused Parkinson's-like symptoms. The tongue movement started when I went off Abilify (15mg/day).

My psychiatrist offers no explanation or treatment for the movements. My family practitioner has suggested that the symptoms could be from either tardive dyskinesia or Parkinson's. I am sure a full differential would include other physical and psychiatric disorders.

Are there tests that could confirm a diagnosis, or will I need to have a variety of (very expensive) tests to rule out other causes? Is it likely that the only treatment would be symptomatic, not curative? Could you explain how your Parkinson's Disease and Movement Disorders Center arrives at a diagnosis, and hopefully treatment, for movement disorders? Who does what type of testing? Does it usually require multiple appointments? (I ask because I live over an hour's drive away.) Can medications be helpful with the type of symptoms I have?

Dr. Chen-Plotkin responds:
It's sometimes tough to differentiate between a tardive dyskinesia and Parkinson's disease. Hearing the story, it sounds like the tongue-thrusting is indeed a tardive dyskinesia (would be unusual in Parkinson's, and happened when you stopped Abilify). The tremor and balance problems could be from either cause.

There are no tests, expensive or otherwise, which would tell the two apart--we generally make this decision based on clinical impression. That said, we can usually come up with a reasonable guess as to which process is causing symptoms, and certainly we could make recommendations about medications to either stop or start for the symptoms. If it's Parkinson's, then there are certainly medications that can help with the symptoms.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Eva asks:
I go "off" every two hours now and I just recently noticed that I get terrible lower back pain during this period. I am also breathing through my stomach and I feel that I can't get my next breath.

Just as a frame of reference, I had a gastric stomach emptying test (with nuclear medications) last week. I have not received a report back yet.

I also have a slight tear in my left miniscus and I was given a cortizone shot. I take 1-1/2 Sinemet 25/100 and Comtan every two hours. The non-Parkinson's disease medications are Synthroid, Lipitor, Vitamin D 1.25mg (once a week), a multivitamin daily, Celexa 20mg, Clonozapram 21/2 mg per day, and Sin CR 50/200 at bedtime.

I'm really concerned about the shallow breathing, low energy and back pain. It's all moving too rapidly. I feel that my medications are being switched too frequently.

I've had Parkinson's disease for 13 years. I am 62, young, and married with two daughters.

Should I be on an agonist? I could ask a million more questions, but would like to start with these, as they are new for me.

Thank you!

Dr. Chen-Plotkin responds:
It's possible an agonist could help. Have you asked your neurologist about this possibility? It's important that you work closely with your doctor, especially as the disease progresses.

The other thing to raise as a question is whether you would (now or in the future) be a good candidate for deep brain stimulation. In well-selected patients, already on maximal medical therapy and experiencing significant motor fluctuations, this is sometimes a good option.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Stan asks:
Does the use of hyperbaric oxygen treatment help in reducing the symptoms of Parkinson's disease?

Dr. Chen-Plotkin responds:
There is no evidence that hyperbaric oxygen helps with Parkinson's disease.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Julie asks:
My sister is in her early 50's. She has symptoms of Parkinson's disease along with severe pain. What is done to help patients with Parkinson's that deal with pain? Do some types of medications help?

Dr. Chen-Plotkin responds:
It depends on what is causing the pain. In some cases, the pain is not related to Parkinson's disease, in which case normal therapies (narcotic and non-narcotic medications, behavioral methods, etc.) would be the right choice.

In situations where the pain is related to Parkinson's, it is often because the disease causes a person to hold the body in a stiff or awkward position or because there is dystonia associated with the Parkinson's. In these cases, sometimes what is required is adjustment of the Parkinson's disease medication.

One helpful thing would be for your sister to track when she gets the pain in association with when she takes her Parkinson's medications. That may help her doctor to figure out if the pain can be helped by changing the timing or dosage of her Parkinson's medications.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Bdudlick asks:
My mother was diagnosed with Parkinson's disease approximately six months ago. She was initially prescribed Sinemet; however, it was discontinued because of the side effects: confusion, paranoia, extreme agitation, and dementia.

Her neurologist felt that since the side effects outweighed the benefits she should stop taking it. We're concerned that without any therapy to combat the Parkinson’s my mother’s condition will continue to degenerate. Do we have any other options?

Dr. Chen-Plotkin responds:
Currently, there are no medications that slow or stop the progression of Parkinson's disease. The medications that are prescribed (such as Sinemet) are only to treat the symptoms of Parkinson's disease.

Therefore, if your mother has significant side effects, it might be true that the side effects outweigh the benefits for the medication.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Tildy asks:
Someone in my family has Parkinson's disease and has really scary panic attacks, to the point where she shakes uncontrollably during the attack and says she cannot get her breath. I don't know what to do for her when this happens. Any suggestions?

Dr. Chen-Plotkin responds:
Anxiety and depression are very common in Parkinson’s disease, and they should be treated as well as the motor symptoms of Parkinson's disease.

Does your family member have medication or see a psychiatrist for the panic attacks? If not, then you should ask the neurologist managing the Parkinson's disease what to do about them (there are certainly medications that may be useful).

Often, the anxiety attack can make the Parkinson's disease symptoms seem worse, and getting Parkinson's disease symptoms can in turn trigger an anxiety attack, so it's important to address this issue.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Mike asks:
Twenty years ago my father had a brain tumor removed which was followed by a series of radiation treatments. He suffers from just about every Parkinson's disease symptom there is. He sees a neurologist on a regular basis and the physician believes that the issue is from the previous radiation treatments.

I understand that there is no definitive test for Parkinson's. I've been doing some reading on the disease and see that it is caused by the lack of dopamine in the brain. Since radiation destroys cells, can it cause a person to develop Parkinson's? If it is not considered Parkinson's can it be treated in a similar manner?

Dr. Chen-Plotkin responds:
Usually, Parkinson's disease is idiopathic, meaning that we don't know the exact cause. However, sometimes a stroke or tumor or other form of brain damage can cause symptoms that are similar to Parkinson's disease.

At a practical level, what probably makes sense is to try the medications that work for idiopathic Parkinson’s disease in your father's case (these usually increase the dopamine in the brain).

If your father has idiopathic Parkinson's disease, he will most likely respond to the medications. Even if he has the symptoms from the brain tumor and radiation, he might respond, although that is less likely than in idiopathic Parkinson's disease.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Bill asks:
I was diagnosed with Parkinson's disease about 11 years ago, and managed well on the usual medications, until about 2 months ago. Sudden onset of extreme weakness, particularly after (or during) meals, much intermittent fatigue during the day, and many naps, some as long as 2 hrs. Is this common in PD?

My physician has had me try different combinations of medications and different schedules, to no avail. I take Sinemet 100/25 and 200/50, four times a day, and also 1/2 Quitiapene at bedtime to help with nightmares.

I am 76 years old, walk and exercise daily (except when I am too weak) and maintain a healthy diet. I live on a farm and miss being able to take care of things!

Dr. Chen-Plotkin responds:
Usually PD would not manifest as attacks of fatigue and weakness, although sometimes people mistake the slowness of being "off" with weakness. If it is "off" time that is affecting you, then this would tend to occur more towards the end of a Sinemet dose (i.e. in the 30-60 minutes before your next dose).

It is also very possible that something other than PD is causing you to feel more tired and weak, and that is something that your primary care doctor and your neurologist may be able to work with you to sort out.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

June asks:
Three years ago, I suffered an acute respiratory distress and a brain concussion. I was thirty-nine. Hours later, I developed shakes, tremors, ballistic movements and slurred speech. I was prescribed Lorazepam, but after taking it I had convulsions, cardiac arrest and a cardiac infarction.

After cardiac arrest, my movement problems got worse. I started having seizures. I was diagnosed with post-hypoxic myoclonus (Lance-Adams syndrome). I was taking Requipe and Keppra with a significant improvement of shakes and tremors, walking and speech.

Six months ago, I started taking Stalevo, which not only completely resolved shakes, tremors and ballistic movements, but improved my reading, typing, memory, and understanding. I was very happy, but now shakes started slowly creeping in.

My doctor says that I might have an atypical Parkinsonism. What would be the right imaging test from those available at the University of Penn to have to determine if I have Parkinson's or Lance-Adams syndrome, or something else?

Dr. Chen-Plotkin responds:
There are no good clinical imaging tests to determine whether a person has Parkinson's or not. Usually, the imaging is done to make sure there is not "something else" going on.

In your case, I would expect that there might be abnormalities on MRI from the hypoxic injury, so while one might see "something else," this would not help to decide if there is also Parkinson's.

On the research side, some groups do image parts of the dopamine system (such as the dopamine transporter, or dopamine itself). If there were deficits in the dopamine system, it might suggest that there is atypical Parkinson’s or other injury to the dopamine system that would explain your response to Stalevo and Requip.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Randy asks:
I have had my right hand tremor now for some time. I am active and play basketball water ski and baseball. I have lost my balance several times and have trouble running now. My tremors get worse during game time. My doctor has referred me to a neorlogist. I have had an MRI of my brain it was normal. Now he has ordered an MRI of my upper spine. The only thing he says is “puzzling”. What things should I expect and what could be puzzling him? I am 38 years old.

Dr. Chen-Plotkin responds:
It’s hard to tell what is going on without seeing you in person. In general, tremors fall into two categories—those that occur at rest (while you are just sitting there) and those that occur while you are holding the limb in a posture or doing something with it. The possible reasons for these two classes of tremor are slightly different. For example, in Parkinson’s Disease, most people experience a tremor at rest. I would encourage you to ask your neurologist directly what he thinks is going on, and what is puzzling him.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Grammie asks:
Is there any study that shows that a person with Parkinson's is likely to take something and either hide it or destroy it? They would not know that they had done this thing.

Dr. Chen-Plotkin responds:
Sometimes people with Parkinson's Disease develop cognitive deficits and even dementia. This might lead someone to do things that don't make sense and that they do not remember afterwards. In addition, sometimes people with Parkinson's Disease may develop hallucinations (seeing or hearing things that aren't there) or delusions (believing things that are not true). This, too, could lead to behaviors that are hard to understand. Sometimes the disease causes these symptoms, but sometimes medications can worsen it -- the important thing may be for you to discuss these behaviors with the doctor taking care of the person with Parkinson's Disease.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Phil asks:
I was dianosed with Parkinson's disease five years ago. My symptoms have been reponsive to ledopa treatment. I take Stelevo 100 mg four times a day in five hour intervals. This is combined with two Reqiup XL 2 mg at 10:30am and 7:30 pm. My medication has increased to this level over the five year period to control.

I have tremors, alien limb movement, and balance problems. Recently I have experienced violent body convulsions like attacks during evening hours and have fallen approx 12 times. Taking the fourth stalevo late at night has helped somewhat.

Are these violent attacks and falls typical Parkinson's and will they become more severe? Can my current medication level be elevated to control this new level of activity without encountering problem side effects? Are there any medications on the horizon that could better control these attacks? Thank you for any input you can offer.

Dr. Chen-Plotkin responds:
It is hard to tell without being your doctor whether these violent attacks are a consequence of too little medication or too much. Sometimes there is a tendency to have dyskinesias (extra movements caused by the medication, rather than the Parkinson's itself) in the late afternoon and evening.

I would ask your doctor whether it's possible these attacks are dyskinesias. If so, two potential strategies to pursue would be to decrease the medication and/or add a medication that decreases dyskinesia called amantadine.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Bettyann asks:
My husband was diagnosed with Parkinson's disease three years ago. About that same time he was diagnosed with vertigo of unknown cause. He has had an MRI and EMG and seen ENT's with no explanation for the vertigo except that he has Parkinson's. I am a nurse who has taken care of many Parkinson's disease patients in the nursing home setting and have not seen dizziness (to the degree my husband has it ) to be a problem.

Do Parkinson's patients suffer from extreme vertigo (he often runs into walls...and it's not gait related).. He tried to PT route with no success. I want him to have a better quality of life...he is only 54 years old. Should I look for further workup for his vertigo...and if so where? Also we are considering a second opinion for his Parkinson's follow-up...he currently goes to OSU but the lead doctor just left and it just doesn't feel the same. The dizziness limits his driving but I would be willing to travel with him to find him the best doctos for this. Can you help me?

Dr. Chen-Plotkin responds:
While Parkinson's disease often manifests with balance difficulties, it is unusual to have a sensation of extreme motion or room-spinning. I think there are a few possibilities. Either he has Parkinson's disease and another cause for the vertigo. Or he has Parkinson's disease, and he is just on the extreme end of the balance difficulties. Or he has a form of parkinsonism that is not Parkinson's disease and causes more prominent issues with balance. In any case, it is worth asking your doctor to explain to you why he or she thinks that the diagnosis is Parkinson's disease and the vertigo is related to the Parkinson's disease. If you don't find the explanation satisfying, then you could get a second opinion. Often the second opinion is the same as the first, but it is still helpful to know that two different people think the same thing.

We could see your husband in our center at Penn, but I think from your zip code that this may be very far away; you could ask your initial Parkinson's disease doctor or your new one what might be good specialty centers closer to you.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Damon asks:
I am a 59-year-old man who was diagnosed with Parkinson's disease four years ago. As time passed it became evident that my disease was multiple system atrophy (MSA) rather than Parkinson's. My most evident symptoms are weakness, unable to walk, badly slurred speech, and urinary and bowel problems.

I currently take eight Sinemet per day and I continue to deteriorate. I am discouraged. Are there any experimental drugs, vitamins, or health foods which I might try? Are there any clinical trials that I might enroll in?

Dr. Chen-Plotkin responds:
Unfortunately, there are no treatments that have been proven to treat multiple system atrophy. There are some clinical trials, although it is important to remember that these are experimental therapies that might not help and might even cause harm — the trials exist to test whether these therapies are effective and safe.

One resource for finding clinical trials that are actively recruiting patients is a web site maintained by the National Institutes of Health that keeps track of trials funded by government money: http://clinicaltrials.gov/ct2/home. You can search for trials recruiting for multiple system atrophy, and there are contact numbers for the people who run the trials.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Karpal asks:
I developed light tremors in my right hand two years ago in India. I consulted a neurologist in Chandigarh, India in March, 2008 who after examination told me that I am having Parkinson's disease and suggested following medication: Ropinirole 0.5 mg three times a day, Selegiline 5 mg once daily, and Pacitane 2 mg twice daily.

Since I am living in Delhi, India and it is difficult to go to Chandigarh at regular intervals I consulted a neurologist in Delhi in May, 2008 who put me on to the following medicines: Selegiline 5 mg once daily, Ropinirol increased from 0.5 mg in May, 2008 to 0.75 mg to 1.0 mg in November, 2008 thrice a day. I was taking these two medicines until I came to the USA to visit my daughter in March, 2009.

My daughter took me to two neurologist friends for advice. Both the neurogists were of the opinion that there is no need to continue Selegiline and I should take Ropinirol 2 mg (instead of 1 mg). I am now taking 2 mg thrice a day from April, 2009. The progression of my Parkinson's seems to be quite slow as per the opinion of neurologists in USA. They want to reserve use of Sinemet for sometimes later. In addition to the medicines I am practicing Yogic exercises for about two hours daily.

I will be going back to India in August, 2009. My question are:

  • Are my medications adequate?
  • Is there any need to consult a Parkinson's specialist?

Dr. Chen-Plotkin responds:
All of the medications mentioned are reasonable for treating early Parkinson's disease, and the exercise is a good idea as well. I think that you are probably the best judge of whether the medication is adequate. Does it adequately control your tremor? Can you walk easily? Are you able to perform your normal daily activities? If the answer to these questions is yes, then I think you are on a good medication regimen.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Pennbiology asks:
I have a question about Parkinson's disease for you. My friend was diagnosed with the Parkinson's at the early stage. Is there any good way to alleviate the symptoms? What is the best hospital in the U.S. to treat this disease? Does exercise, physical therapy and improved diet help? What does he need to pay special attention to?

Dr. Chen-Plotkin responds:
Symptoms of Parkinson's disease can be controlled/alleviated for many years with medications. Exercise and physical therapy also definitely help, especially if walking and balance are at all affected, and a good diet certainly can't hurt. As for hospitals, there are a number of renowned Parkinson's centers across the U.S. The closest, of course, is the Parkinson's Disease & Movement Disorders Center at Pennsylvania Hospital (with which I am affiliated — full disclosure!).

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Jeanne asks:
I started having shaking in my hands a couple of years ago, usually when I was holding something or stressed. Then I developed a stiff right shoulder and eventually it spread down the arm to the hand. I wasn't able to blow dry my hair, put on make-up, brush my teeth, etc. I saw a neurologist and he told me my symptoms seemed consistent with a Parkinson's plus disease, specifically corticobasal degeneration (CBD).

I'm taking Sinemet and it's better, but my right arm and leg still feel odd and my arm tends to be stiff and tense all the time. My arm moves and my toes clench. How can I know if I have CBD or Parkinson's? From what I've read it could be either one. I'm a 54 year-old female, if that makes a difference.

Dr. Chen-Plotkin responds:
The only way to truly know the diagnosis is to examine your brain under a microscope — which is usually not possible while a person is still using his or her brain! That said, at a practical level, it does not matter which disease you have because you have a response to medication (Sinemet).

This is almost universally true in Parkinson's and not always true in corticobasal degeneration. However, because it is the most effective drug for either disease, we usually give the medication a try — and in your case, it sounds like this decision was the correct one.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

CF asks:
I have tremors when I move, not when I'm still (like in Parkinson's), but I have extreme weakness, and some loss of balance. I'm told this could be dystonia. Does the movement center see people for this? Does it sound like Parkinson's?

Dr. Chen-Plotkin responds:
Yes, we do see people for possible dystonia. It is hard to tell without examining you whether this is Parkinson's since some people with it do not have the typical rest tremor. If there is a question, it's a good idea to ask your primary care doctor whether you should see a neurologist.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Seamrog asks:
I am infrequently feeling severely nauseated — I'm not able to eat or subsequently take my meds correctly. Could this nausea be related to Parkinson's?

Dr. Chen-Plotkin responds:
It's possible that this is related to your parkinson's medication. Levodopa-carbidopa, one of the main medications we use to treat Parkinson's, is a combination of the active medication (levodopa) and an agent to keep it from being used outside of the brain (carbidopa). If some of the levodopa is used outside of the brain, it can result in a certain degree of nausea. This can be easily addressed by adding more carbidopa. Ask your doctor about this possibility.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Luv asks:
I was told I have Parkinson's and I am on three different medications and they don't work. I take carbidop a-levo 25-100 tabs tev, ropinirol4 mg tab, and amantadine 100 mg. Could it be that it might not be Parkinson's?

Dr. Chen-Plotkin responds:
It's hard to tell without examining you, but I think there are three major possibilities. One is that the dose of medication you are on is not high enough. We usually go to three tablets of Carbidopa/Levodopa 25/100 taken three times a day (total of nine pills daily) before we decide that this medication is not achieving a response.

The second possibility is that you don't have Parkinson's disease but rather a mimic of this disease (like multiple system atrophy, which is another neurodegenerative disease). The last possibility is that you are in that rare group of Parkinson's patients who do not have a good response to the standard medications; these patients are in the minority, but they do exist.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Sajid asks:
For past few years I have been noticing shakiness in my right hand and some disbalance of body while standing. This month I was visiting overseas Pakistan and thought of showing it to neurologist. He examined me and ordered brain MRI. While MRI results are normal, he suspected Parkinson's symptoms. I get more than usual saliva in my mouth, and my weight has been slowly decreasing. Unfortunately, I do not have health insurance, but am ready to pay doctors' fee. I want confirmation if I have this disease and what precautions I can take and how to lead the life. I am only 35 years old.

Dr. Chen-Plotkin responds:
You should see a doctor, since if you do have Parkinson's there are medications that can help. The MRI in Parkinson's disease is usually normal. Also, if you do see a doctor, be sure to bring a copy of the MRI if you have it.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Jad asks:
I have been dianosed with Parkinson's for over seven years. Married for 25 years. How important is sex for Parkinson's? My wife stopped sex when I was diagnosed. I will let her see your answer. She is 67, same age, but no sex drive. I am on the verge of looking somewhere else. If she sees your answer maybe she will change her mind.

Dr. Chen-Plotkin responds:
Having sex will not affect your Parkinson's disease — meaning that it won't make the disease worse and you are not more likely to hurt yourself because you have the disease. It may be worth talking to your wife in general about her feelings about your diagnosis. This is a disease that affects a whole family, and talking about how everyone feels about it might make you closer in many ways.

Cassandra asks:
Can stage two Parkinson's disease affect your mood?

Dr. Chen-Plotkin responds:
Yes, mood disorders (usually anxiety or depression) are common at all stages of Parkinson's disease, and it is important to recognize and treat them. If you feel you may be suffering from depression or another mood disorder, speak to your doctor about this — antidepressants or other medications might make a big difference in quality of life.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Marie asks:
I have been having tremor in my right hand, and sometimes it moves up my arm. I have really bad cramps in my toes and legs. I am tired more than normal, and my body feels like it is 100 years old, but I am only 36. I hurt all of the time. Should I see someone for Parkinson's disease?

Dr. Chen-Plotkin responds:
There are many reasons for cramps and tremor, and you are right that it would be unusual to have Parkinson's disease at age 36. That said, people in their 30's do sometimes get Parkinson's.

What I would suggest is speaking to your primary care doctor about whether it would be appropriate for you to see a neurologist. A general neurologist should be able to diagnose Parkinson's disease — and would also be able to recognize other possible neurological reasons for your symptoms.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Ari asks:
Are there centers in the NYC or Palm Beach Gardens Florida area who specialize in rehabilitation for persons with Parkinson's disease?

Dr. Chen-Plotkin responds:
I don't know about Palm Beach, but my colleagues at Columbia University in New York City (who see many patients with Parkinson's) tell me that all the major rehabilitation centers in New York have program for Parkinson's patients. The Rusk Institute is probably the largest of these centers. Good luck!

Wow asks:
What do you think? Lack of arm swing, will at times lose balance, and I have difficulty to get moving when standing. Stiffness is an issue. I have been seeing a neurologoist and I am on Ropinorole. The medication has helped. I also have some depression and quite a bit of anxiety.

My neurologist ran numerous tests and that is when I started Ropinorole and received a diagnosis of possible Parkinsons. Should I see a neurologist that is more of a Parkinson's Specialist? I am not disabled. My worse physical condition is balance. I also have difficulty with memory.

Dr. Chen-Plotkin responds:
The cardinal symptoms of Parkinson's Disease are tremor, rigidity (stiffness), bradykinesia (slowness in movements) and problems with balance. Many of these do sound like symptoms you have, but it is hard to judge without examining you. If you are worried that you have PD, it is reasonable to see a PD specialist (we frequently get referrals from general neurologists to help establish a diagnosis for someone who might have PD). Good luck.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Don asks:
I have had Parkinson's Disease for 9 years. I am on a very good regiment of medication, siniment, carbidopa, and comtan. I tolerate all these meds well. I am currently in the Navy and deployed overseas.

Three days ago I had an episode that I never experienced before. I had extreme shaking in both hands, very confused state to the point I did not know where I was, and a very vivid nightmare at this time. I was very unresponsive for approximagely 30 minutes. All labs and blood work came back with great results. Heart rate, blood pressure and pulse rate were well within normal limits. The original tremor I had in my left hand has become a little more significant. The job I perform sometimes deals with high temperatures exposed to the body. I was NOT dehydrated and my sodium levels were well within limits. What is the possibility of this episode being from the progression of the disease. Also could the type of environment I am in be causing this to happen.

This was the first episode of this type. We are also waiting on the Navy neurologist in Norfolk to state his side on this. I have been in the Navy for 26 years and will transfer soon to shore duty. I wonder if it is time to ask them to transfer me early to avoid another episode of this type. Thanks for your attention in this matter.

Dr. Chen-Plotkin responds:
It is hard to know whether the episode you experienced was related to the Parkinson's, since many medical conditions can occur in someone who is middle-aged or older. That said, if this is related to the PD, one thing to consider is whether you are experiencing some autonomic dysfunction. The disease process in PD can affect the nerve cells that regulate your sympathetic ("fight or flight") and parasympathetic ("rest and digest") nervous responses. Hopefully, your doctors can help you find a cause, or at least rule out dangerous causes (like heart problems or seizures).

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Maria asks:
When PD is at Stage V (with DBS twice implanted and once removed two years ago now), and the cognitive decline is in the severe range, with a patient who shows swallowing and eating difficulties moving into the severe range, is young (57) and in good health, is there a way to measure the rate of decline for a prognosis as to end of life?

If my husband is declining fast, I would put my resources to making him as comfortable as possible and would use my meager savings to do so, but if he may need my resources for a much longer time, impacting my decision to keep him home, then I would need to save and use my resources over a longer extent of time.

Web sites are helpful in identifying the diseases, Parkinson's or LBD, and general Dementia, but I am finding it difficult to find information on end stages ... If swallowing has become difficult, but he is mobile, weak, but moving, and the chewing and swallowing process often ceases, like a switch turned off, is the decline accelerating? It's been six weeks since we noticed a dramatic change. Meds this past week have been adjusted downward to compensate destructive cognitive symptoms.

Dr. Chen-Plotkin responds:
I am sorry to hear about your family's situation. As you note, it is hard, likely impossible, to predict the future. However, from your description, it does seem like hospice care may be an appropriate decision. I hope also that you are able to take care of yourself at this time. This is an important thing to do, too.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Michelle asks:
Is there a treatment for dementia in Parkinson's disease? What medications do you recommend? Is there anything my Dad can take for hallucinations?

Dr. Chen-Plotkin responds:
Unfortunately, the dementia that develops in some patients with Parkinson's disease is much harder to treat than the motor symptoms. That said, some people see a modest improvement with medications usually used for Alzheimer's disease (like cholinesterase inhibitors and memantine).

In addition, hallucinations can be treated with careful use of medications in the anti-psychotic class such as quetiapine (Seroquel). This should be done with the close supervision of your doctor because these medications can sometimes make the motor symptoms of Parkinson's disease slightly worse.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Ann asks:
I have a foul taste in my mouth that won't go away. I have not changed medications. I have had Parkinson's disease for eight years. Taste is so bad that I don't want to eat. Could this be Parkinson's disease or something else?

Dr. Chen-Plotkin responds:
Parkinson's disease does not usually cause foul tastes in the mouth. However, a large proportion of people with Parkinson's disease gradually lose their sense of smell (many even before they get other symptoms of Parkinson's). Because our sense of taste is so influenced by our sense of smell, it's possible that Parkinson's disease is contributing to your altered sense of taste in this way.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

MC asks:
My father-in-law was told he had Parkinson's six months ago. He was given medication, but he loss mobility but has strength in his legs and has hallucinations. Now after a MRI he was told he has vascular parkinson's. What is vascular Parkinson's?

Dr. Chen-Plotkin responds:
Vascular parkinsonism means that the doctors think that symptoms are due to stroke or other problems of the blood vessels rather than from idiopathic (or "garden-variety") Parkinson's disease.

While Parkinson's disease almost always responds to dopamine-containing medications, vascular parkinsonism may not. It is still worth a try with the Parkinson's disease medications, but if they are not helping and causing side effects, then you should ask his doctor if he should continue them.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Carol asks:
My husband takes Azilect for Parkinson's disease. He is 51 and just ruptured his achilles tendon. His surgery is scheduled for next week. Should he discontinue his medication? He has also been prescribed Percocet for pain management.

Dr. Chen-Plotkin responds:
Your husband should check with the surgeon who will do the tendon repair about the rasagiline. Usually, if anesthesia is expected, surgeons prefer that the rasagiline be stopped prior to the surgery because of the small chance that it may interact with the anesthesia or other medications.

It should not hurt from the Parkinson's disease perspective to take a short break from the rasagiline although he may notice the Parkinson's disease symptoms are very slightly worse off the drug.

Annie asks:
I am wondering why there are not more like me — taking two dopamine agonists (one long acting, one short acting), plus Azilect; DBS five years ago and UPDRS score pre-op off meds 56, post-op on meds and DBS on 13, latest UPDRS scores - off everything 70, on everything 3. No dyskinesia or wearing off or hallucinations. Why is a non-dopaminergic treatment path not considered especially for the younger pwps?

Dr. Chen-Plotkin responds:
There is no reason not to use dopamine agonists without levodopa in patients who do well (like you seem to be doing) on them. The reason that most people end up on levodopa is that they get less effect from the dopamine agonists and run into unwanted side effects like vivid dreaming/hallucinations.

As a separate issue, you are unusual in that you had DBS without being put on levodopa. In most cases, people have tried to maximize medication response before turning to surgery.
However, in select situations (such as tremor-predominant PD where medication is not really helping the tremor much) DBS is considered before "maxing" out medications.

Tom asks:
I do a lot of public presentations in my work, and I am always a bit anxious because I don't know how my tremors will be. Adrenalin rushes and stressful situations have unpredictable outcomes.

I read recently on the National Parkinson's Foundation web site that inderal has been used on people before making public appearances. Is that a possible course for me? I am 49 and have had Parkinson's disease for about 10 years.

Dr. Chen-Plotkin responds:
Inderal is frequently used to treat a different kind of tremor from the kind seen in Parkinson's disease. This is called essential tremor and tends to increase as a person is trying to perform an action (rather than occurring at rest, as is frequently seen in Parkinson's).

That said, some aspects of Parkinson's disease tremors may respond to Inderal, especially as the medication directly counters the effect that anxiety has on your sympathetic nervous system. I would suggest asking your doctor what he or she thinks.

As long as you don't have other health reasons not to try Inderal (such as a low heart rate), it may be worth a trial to see if helps for specific situations like public speaking events. Also, sometimes patients try to time a Sinemet dose before social or public situations for similar reasons.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Elaine asks:
What effect does my 10-year diagsosis of Parkinson's disease have on my teeth, gums, and bones? At 73 years old should I spend $20,000 on implants and caps?

Dr. Chen-Plotkin responds:
Parkinson's disease should not affect the teeth, gums and bones. You should make the decision about the dental work based on your overall quality of life. Good luck!

Vince asks:
My aunt, who is less than 60 years old and lives in rural China, was diagnosed with Parkinson's three years ago. At that time, her doctor started treatment with Madopar. However, probably due to financial difficulty, she was on and off the medication. But the disease didn't progress much in the beginning (at least when I was back to China and saw her two years ago).

Unfortunately, her husband died from a heart attack suddenly after her diagnosis. She suffered deep depression because of the loss and other issues in the family. And her situation worsened noticeably ever since. Long story short, in August 2008, she was diagnosed with depression and was given some medication. But it doesn't help.

A new doctor's diagnosis includes brain shrink and she appears having schizophrenia. Here are some of the current symptoms:

  • She doesn't know when to eat.
  • She suffers urinary incontinence.
  • She can't go to sleep in the night.
  • In a couple of incidents, she wandered to neighboring villages, not aware where or why she is there.

I would like to ask experts on this forum if her recent development is reversable? Or if surgery can help her improve? Based on my vague description of her symptoms, what is your advice?

Dr. Chen-Plotkin responds:
Your aunt's situation sounds very difficult. In general, depression is very common in Parkinson's disease (PD), affecting as many as 1/2 of all patients with PD. Usual symptoms might be difficulty with sleep, loss of appetite and general desire to do things, depressed mood.

In your aunt's case, some features argue for more than depression. These include the urinary incontinence and the wandering/confusion. Some possible other explanations for these symptoms include a loss of cognitive ability which is sometimes part of the Parkinson's disease process. Loss of cognitive abilities, or dementia, develops in an estimated 1/3 to 2/3 of PD patients during the course of their illness, usually at a later stage than you describe. This would be an irreversible process, and it is usually the hardest thing for patient families.

The other explanation that should be considered for your aunt's situation is that some of her symptoms are due to side effects from some medication. PD patients are sensitive to medications, so it is important to ask her doctors whether any of her medications could be causing the confusion and incontinence. If some symptoms are medication side effects, they could be reversible.

In terms of surgery, usually we consider mental confusion a relative contraindication for surgery.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Jo asks:
By movement disorders, do you mean ataxia? We are seeking research for cerebellum degeneration. We have three family members with this brain disorder.

Dr. Chen-Plotkin responds:
We do see patients with ataxia in our movement disorders center. In addition, there are numerous research studies with which we are affiliated, as well as research studies at other centers to which we can direct you, if they are more appropriate.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

Paul asks:
I have seen a number of articles on the Internet regarding low dose naltrexone (LDN). This drug was approved by the FDA at a dose of 50 mg/day to treat drug and alcohol addiction. Taken at a low dose of 4.5 it is claimed to treat autoimmune diseases and central nervous system disorders. A number of trials are currently being conducted on patients with AIDS, multiple sclerosis and Crohn's disease with some success.

I have seen reports from individuals who have reduced Parkinson's symptoms with LDN, but have seen no mention of clinical trials for Parkinson's. What are your thoughts on low dose naltrexon? Do you know of anybody who is using it for Parkinson's?

Dr. Chen-Plotkin responds:
Naltrexone (and other medications that block the brain signaling system for some painkillers (opiates)) have been reported to decrease dyskinesias (extra movements) in animal models of Parkinson's disease. However, at least two trials using naltrexone in high doses (>250 mg/day) and low doses (100mg/day) in Parkinson's disease patients did not find any clinical benefit. Because of this, we don't use naltrexone routinely in Parkinson's disease, and I don't think it's likely to be helpful.

Ter asks:
Is deep brain stimulation an option for someone with Parkinson's disease and has a pacemaker?

Dr. Chen-Plotkin responds:
Yes, deep brain stimulation is possible in people with Parkinson's disease and cardiac pacemakers. It is still important to be evaluated by a specialist to be sure that you are an appropriate candidate for deep brain stimulation.

If you have any additional questions or would like to schedule an appointment, please call us at 800-789-PENN. You can also request an appointment online.

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