Questions and Answers 173 -

Please note that no treatment should be altered without prior consultation with your specialist or GP.

Any medical advice given by Dr. Lynch or PDNS Brian Magennis via this page is not intended to establish a doctor-patient relationship. Copyright in these answers remains with Dr. Lynch, and Dr. Lynch reserves the right to use the content of these questions and answers for patient education/information purposes.

Question 173

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Question posted March 12, 2006

Could Sinemet Plus taken with Requip cause diarrhoea? I have been taking Requip but just added in Sinemet recently.

Answer posted March 15, 2006

Sinemet Plus would not be renowned for causing diarrhoea. The usual side-effects of Sinemet include nausea often relieved by taken Motilium one hour before the Sinemet or taking the Sinemet with food. However the Sinemet is not as reliably absorbed with food as compared to taking it one hour before eating. Requip also would not be renown for causing diarrhoea but can cause nausea, drowsiness, leg swelling and lightheadedness. Therefore I suspect the diarrhoea may not be related to the Sinemet Plus or Requip. Of note when combining with Sinemet with Entacapone (Comtess, Stalevo) some patients develop bad diarrhoea.

Dr. T. Lynch

Question 174

Answer

Question posted March 12, 2006

I have difficulty walking on my right foot. I can't seem to manage to walk heel toe and now have dropped transverse arches and a puffy foot with painful toes. This is causing me a lot of hassle and the loss of my independence. I am wondering do I need arch supports or does my medication need adjusting or both. Thank you.

Answer posted March 15, 2006

I am unclear whether the problem with your right foot is related simply to a local problem with the foot or relation to the Parkinson's disease. Occasionally some patients present with crunching upwards of their toes at the onset of Parkinson's disease. Furthermore this crunching can get worse particularly in the early morning when the medications are at a low ebb. Many of the medications (Amantadine/Symmetrel, Ropinirole/Requip, etc) can cause ankle swelling and puffy feet. I would suggest that you attend your general practitioner who could assess the foot to determine if it is a local problem or is it possibly related to the medications for Parkinson's or the Parkinson's itself.

Question 175

Answer

Question posted May 24, 2006

My father says he is slowing getting worse. One of the symptoms that is interfering with leading a normal life is lightheadedness. He has purchased special stockings to wear but he said the stockings do not alleviate the feeling he has. Is there anything else he can do for this? It is breaking my heart to see him so miserable and knowing I can't do anything about it.

Answer posted May 29, 2006

lightheadedness can mean many things. Sometimes people refer to the fact that they feel lightheaded and about to faint or on other occasions it means that there balance is poor or on other occasions they mean that they have spinning or vertigo. Lightheadedness associated with a tendency to faint can commonly occur associated with medication in Parkinsons. If your father gets lightheaded on standing up it would be worth getting him seen by his general practitioner/physician so that his blood pressure can be checked lying/sitting/standing. If there is a significant fall in the blood pressure on standing it indicates that he has postural hypotension (a drop in blood pressure on standing) and this can cause lightheadedness. If so support stockings that he is using in addition to increased salt and fluid may resolve the problem. If this does not resolve the problem he might need medication adjustment or additional medication such as Florinef (Fludrocortisone) or Midodrine (Midon) which both increase blood pressure. This should be done under the supervision of his physician/GP.

Dr. T. Lynch

Question 176

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Question posted June 2006

AS WE HAVE BEEN LIVING WITH PARKINSON'S FOR SEVERAL YEARS, WE ARE CURIOUS IF THERE IS ANY INFORMATION AVAILABLE ON WHAT TO EXPECT IN THE FUTURE. WE ARE PRETTY MUCH IN THE WHEELCHAIR , AN HOUR IN RECLINER OR IN BED NOW. ANY SUGESTIONS ON HOW TO INCREASE THE QUALITY OF LIFE AT THIS POINT. Parkinson's diagnosed 1990.

Answer posted June 28, 2006

It is difficult to be able to comment specifically in relation to your question. It essentially depends on the form of parkinsonism you have. Three quarters of people with parkinsonism have the straightforward idiopathic Parkinson's disease that tends to be slowly progressive and responds to therapy. Frequently patient's lifespan is normal in this condition albeit their quality of life can be somewhat impaired later on in the disease course. One quarter of patients will have an atypical form of parkinsonism that is more rapidly progressive and does not respond to medication as well. As I am unclear as to the type of parkinsonism you have I don't think I can be more specific that this but I would be happy to expand further if you know which form of parkinsonism you have.

Dr. T. Lynch

Question 177

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Question posted June 2006

I had shoulder surgery 4 years ago. They did a nerve block, and since then, I have a tremor in my right hand. I've seen 2 neurologists, they both tell me it's Parkinson's. Is this possible, for a surgery to bring on PD, or could it be nerve damage and they'e covering for the surgeon? Please, can I have your honest opinion? I'm going crazy out of my mind with fear. Thank you so much.

Answer posted June 20, 2006

There is no strong data to suggest that surgery or other forms of trauma can cause Parkinson's disease. Stress and Parkinson's disease is a complex relationship and it is recognized by patients, caregivers and doctors that the symptoms of Parkinson's (tremor, stiffness, slowness) are certainly made worse by stress or surgery. However the onset of Parkinson' s disease is probably not precipitated by stress but occasionally surgery can unmask an underlying tendency to Parkinson's and bring it to the attention of the patient or doctor sooner. A nerve block anaesthesia for shoulder surgery is usually reversible. Occasionally injury to a nerve root or nerve at the neck or shoulder can cause persistent numbness and weakness of an arm but it does not cause the symptoms of Parkinson's such as tremor or stiffness. Therefore I think your physicians and neurologists are being straight and frank with you in their assessment. I should point out that the tremor form of Parkinson's often does best because it progresses at a very slow rate and often is responsive to medication.

Dr. T. Lynch

Question 178

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Question posted October 5th 2006

Hi, I have been on Madopar for 8 years and Cabaser for about 3 years. My legs and feet have becomer swollen and I am finding it difficult to walk through pain in the feet, mainly the right. No one knows why. On looking at the description of Cabaser I note that Oedema is possible. Can Cabaser cause the problem?

Thank you.

Answer posted December 5, 2006

Most dopamine agonists (Cabaser, Mirapexin, Requip, Celance) can cause ankle and leg swelling. If it causes a nuisance then either the medications can be stopped or support stockings (Ted stockings) worn throughout the day (and feet up at night) can be tried. Amantadine (Symmetrel) is another medication that is notorious for causing leg swelling and a rash on the legs.

T. Lynch

Question 179

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Question posted November 18 2006

I am currently taking Mirapexin and my GP has prescribed HRT. Just wondering if they are compatible.

Thank you.

Answer posted November 23, 2006

There is no known interaction between Mirapexin and HRT.

Brian Magennis

Question 180

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Question posted March 20, 2007

After dbs surgery in june 2006,now having big problems with my stimulator, lead etc strange smells and taste,burning,crunching,throbbing starting off spasms and cramps,pressure,swelling,i think it is short circuiting or fractured my medics say not..anyone else got these problems,let me know before my head explodes!!!

Answer posted March 27, 2007

Thank you for your question in relation to problems with DBS. Unfortunately in Ireland we have inadequate experience with DBS and the potential problems associated with its use due to the fact that there is no DBS surgery done in island of Ireland. Thus Ireland is the only country in western europe that is not able to provide this much needed functional neurosurgery for patients with Parkinson's disease and other movement disorders. Hopefully this will be remedied in the near future. In the meantime I will enquire around some of my colleagues if they have any reports of patients having similar symptoms following DBS.

Question 181

Answer

Question posted September 29, 2007

My brother-in-law who lives in New York is the person who has PD. He has been told he is still in stage 1. Over the past four months his condition has drastically changed and deterriorated. He has begun hallucinating e.g. he thinks there are snakes flying around the room, that the house is full of strange people ( he says his wife, who is my sister, has invited these people in to have sex with them). He has refused to go into the bedroom as he said there was a horses head in the bed, so they sleep on the couch most of the time. He is also very confused e.g. he regularly persuades my sister that she is not his wife, he says this other woman is in the house constantly and she is writing cheques and using his money. Last week he actually rang me in Dublin and asked me who was this woman who was living in his house and claiming to be his wife. On several occasions he says he wants to go home even though he is at home. He is under the care of a neurologist and he has recently visited a Parkinsons Specialist in Manhattan, who said to my sister that he did not have a typical Parkinsons, he thought it was something much worse. He had an MRI scan and apart from discovering that he had a few mini strokes they found nothing. He was taken into hospital to regulate his medication, while there he was very agitated and had to be restrained (chest, legs and arms).

In your view are these symptoms of Parkinson's? I am

very grateful for having this chance to ask my question, as my sister is having a dreadful time, they have no family and have no support from anybody.

Many thanks

Answer posted October 3rd, 2007

Thank you for your question in relation to your brother-in-law. It is concerning that he has developed hallucinations relatively early in his condition (I wasn't clear from your email how long he has had the condition and also what age he is). In Parkinson's disease we tend to think of the symptoms primarily being either tremor, slowness, stiffness, stooped posture, poor balance or freezing of gait. All these symptoms occur because of the lack of dopamine within the brain due to degeneration of the cells of the substantia nigra (the pigmented region within the brain stem). These cells when studied under a microscope always have an abnormal collection of protein inclusion within them called Lewy body. In Parkinson's disease these Lewy bodies are usually just localised to this region of brain stem. However some patients present with the Lewy bodies being distributed not only within the brain stem but in other regions of brain involved with memory and behaviour, this is called Lewy body disease. Commonly in Lewy body disease the patient will have not only the symptoms of parkinsonism (slowness, stiffness, etc) but also a tendency for visual hallucinations, myoclonic jerks (intermittent muscle jerks while awake) and significant fluctuations with the symptoms from day-to-day and hour-to-hour. Sometimes the hallucinations can be aggravated by medications such as the dopamine agonist (Pramipexole, Ropinirole, Rotigotine patch, etc). I suspect therefore his admission to hospital in New York was designed to try and simplify his medication to simply the use of levodopa (Sinemet or Madopar) in addition to anticholinesterase (e.g. Aricept, Reminyl, Exelon) which often alleviate or block the hallucinations and improve memory function and/or atypical antipsychotics (Quetiapine or Clozapine). In general it is more difficult to alleviate the symptoms in Lewy body disease as compared to idiopathic Parkinson's disease. If the patient develops the symptoms of Lewy body disease within the first year of the Parkinson symptoms then we use the term diffuse Lewy body disease as a diagnosis.

It is fortunate your brother-in-law is living in New York as there are many excellent neurologists who specialised in Parkinson's disease, particularly at the Presbyterian Hospital, 168th Street, when Prof Stanley Fahn heads up the movement disorder group. They are often an excellent source of information in relation to parkinsonism and Lewy body disease but also you may find some excellent information on the Newcastle, UK university website where they have specific information in relation to diffuse Lewy body disease that was initially well described by Prof Ian McKeith from Newcastle.

Yours sincerely

Dr. Tim Lynch

Question 182

Answer

Question posted October 12th, 2007

Please could you tell me of the status of this very new form of test done here in Ireland as I am receiving conflicting views. A consultant has told me that it is merely a research tool but yet at the Mater and Queens in London use it as a diagnostic tool. My twin has been diagnosed with PD with this scan. I requested it and had it and it states: indicates early stages of PD but my symptoms are VASTLY different to twin, my identical twin. I have dystonia and chorea and my feet especially big toes (!!) go like the clapper all the time.

I seem to have other neuro stuff going on ie, a muscle wasting disorder and am covered in bruises although platelet levels are normal. I have an ataxia type walking movement, very jerky and I need to clamp knees together to stand still. My knees seem to be frozen and I walk with them bent, rather like a person with Cerebral Palsy.

I also have Crohn's disease and possibly Sjogren's (my twin has neither of these). It is possible I may have Hughes Syndrome.

Primarily I would like to understand the STATUS and recognition of the DAT scan here in Ireland and elsewhere.

My twin and I are 'rubella' adults and are severely deaf and have hypothyroidism.

Answer posted October 22nd, 2007

Dopamine transport (DAT) scanning is a very useful functional imaging tool that shows the uptake of dopamine within nigral striatal pathway (dopamine is produced in the substantia nigra and pumped up the neurons into the basal ganglia, the automatic centre for movement). Therefore in Parkinson's disease there is usually an asymmetrical decreased uptake in dopamine in a characteristic pattern. The DAT imaging is also abnormal in atypical parkinsonism (25% of all patients with parkinsonism) but is frequently more symmetrical than than found is Parkinson's disease. DAT imaging is available in Ireland in a number of the Dublin Academic Teaching Hospitals and also private hospitals. Generally I find it of use to distinguish patients with severe essential tremor (the tremor tends to be different in this to idiopathic Parkinson's disease and it is sometimes confusing if the patient has a severe form of the tremor) from Parkinson's disease. Also DAT imaging is useful to distinguish patients with tardive parkinsonism (parkinsonism secondary to psychiatric neuroleptic medication) from parkinsonism. In medication induced parkinsonism the DAT imaging is normal. Finally DAT imaging is also sometimes useful in patients with very mild symptoms of parkinsonism and you are unsure whether they have IPD or not. Overall DAT imaging is not necessary in everybody with parkinsonism but is useful for specific indications to distinguish mimics from idiopathic PD. It is important to emphasize the diagnosis of Parkinson's disease is a clinical one and should not be based solely on brain imaging study.

Your situation is quite complex because of your history of congenital rubella syndrome, Crohn's disease and possibly Sjogren's disease. Furthermore your symptoms of "dystonia and chorea" in addition to some form of muscle wasting and bruising and ataxic walk are not typical of Parkinson's disease. Therefore a diagnosis in your situation would be difficult and would involve detailed assessment by a consultant neurologist with a history and physical examination and then guided investigation to exclude or include specific diagnoses. The purpose of this would be to figure out where your problem is in the nervous system and secondary what is causing it. In particular it would need to be defined whether you have a predominant dystonic, choric or ataxic disorder so that investigations can be honed on this specific region of brain that is causing you most difficulty. Furthermore your history of Crohn's disease and possibly Sjogren's disease raises issues about autoimmune disease that can sometimes cause some of your symptoms.

I hope this is of some help.

Dr.Tim Lynch

Question 183

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Question posted October 22nd, 2007

Thank you for answering my own question, Dr. Lynch. My identical twin is writing up her Phd doctorate, but on returning to London after four months in Ireland has become very 'flat' and very depressed and doesnt want to even look at the Phd. She was SO focused here and worked every morning and would not allow any disturbance whilst working on it. Now all she thinks of are Hobbies for when the Phd is done.

The Phd was VERY, VERY important to her and she had to hold down a job on top of doing it. She left school at 16. Before she deteriorates, I want her to get back to the work. Is there anything I can do or say to help, when I mention the Phd, she gets aggressive and wont discuss it. It is just that I know how important it is to her. It is bad enough having PD without regrets if and when she deteriorates further in the future.

Answer posted November 15th, 2007

I think the best thing to do in this situation where you have a loved one or family relative who is "flat" and depressed is to discuss and persuade them to attend their general practitioner. If your sister is happy that you accompany her to her general practitioner all the better. Her general practitioner would be able to make a clear objective assessment of her mood and advise whether she needs some therapy, medication or referral to psychiatry services. Low mood and depression is a medical condition like many others and should be managed quickly and proactively. I hope she improves shortly.

Dr.Tim Lynch

Question 184

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Question posted December, 2007

I am the twin of the last person's question! I have PD with tremor & dystonia left side. walking is slow & very difficult, balance poor. On Mirapexin 0.7 which I hate. Side effects include sickness, extreme fatigue, nausea, nightmares, sleeplessness, phantosmia, visual disturbances.Also seem to have a compulsion to shop! These all got worse when went up to 0.088 . I'm trying to do PhD (write it up) but I have extrememe memory, concentration, apathy, motivation problems. am on antidepressants too. These non-motor symptoms worse than the motor. I want quality of life and don't know if these effects are the medication or the disease. all the medics and nurses want me to continue increasing the Mirapexin as they say increased dose will make things better. I can't bear how I FEEL. I just feel cruel! If I came off all medication and just shook would that be a very bad idea? Would I cope with a different agonist? Or if I've had problems with this will I have problems with others? Quality of life is my aim. Not to feel S*** all the time. Thank you for considering my questions

Answer posted January 15, 2008

Your raised difficult issues in relation to distinguishing between side effects of medication versus symptoms of parkinsonism or dystonia. It is recognized that dopamine agonists (Mirapexin, Requip, Cabaser, Celance, etc) can cause a significant number of cognitive side effects including drowsiness, sleepiness, vivid dreams, hallucinations, compulsive behaviour including compulsive gambling, compulsive shopping or compulsive interest in sex. Unfortunately there is no way of predicting whether any individual will get these symptoms without getting a trial of the medication. On the other hand parkinsonism in its own way can cause apathy, low mood, slow memory and poor concentration. If your symptoms get worse with increasing doses I think rediscussion with your consultant and medical team would be worthwhile to see if it would be possible to try an alternative either dopamine agonist (Requip, Celance, Cabaser, Neupro patch) or a different Parkinson medication. It is possible you may not get any side effects with a different dopamine agonist. The other medication options for Parkinson's disease of course would include the MAOIb inhibitors (Eldepryl and Azilect), the anticholinergic medication (Kemadrin, Artane, Akineton), Benzodiazapines (e.g. Valium) on an intermittent basis for special occasions and levodopa (Sinemet, Madopar, Stalevo). Overall is sounds like you have some more work ahead of you to try and get the right medication for your particular symptoms.

Dr. T. Lynch

Question 185

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Question posted December, 2007

My father was diagnosed with Alzheimers in 2003 and additionally with Parkinsons in 2005. The Parkinsons Consultant discharged my father the same day he was diagnosed as he felt his symptoms could be controlled by the psycho-geriatrician treating his Alzheimers who has some experience also of Parksinsons. Initially, in addition to Aricept for the Alzheimers, Sinemet was prescribed. About 5 months ago as my fathers tremor has worsened dramatically he was put on Sinemet Plus 100mg 6 a day (2 after each meal), and his Aricept was reduced to every other day. He also takes Tamulosin and Quinine one each a day. His Consultant saif he did not need to see him for another year. Since then whilst his tremor has virtually stopped he confusion has increased massively. He now also has greatly worsend gait, diffculty tirning around which he never had before, can not hold a knife and fork properly and especially at night has involuntary movements. He also breaks out into heavy sweats often - especially after meals or when in bed. This last week he has suddenly started to fall backwards like a lump of lead narrowly avoiding serious falls a couple of times, his tongue has started to poke out involuntarily, and he is having difficulty urinating. Last night within 15 minutes of bed his pyjamas were absolutely sodden with sweat. We have been offered a second opinion on the change in his drugs but can not be seen until end of January and I am really worried. Prior to the change in medication his progression of both diseases seemed more gradual.

Answer posted January 15, 2008

Your query raises a number of complex issues. Firstly Alzheimer's disease and Parkinson's disease can co-exist. However memory problems and cognitive impairment and Parkinson's disease is more commonly due to Parkinson's disease or Lewy body disease (this condition consists of the symptoms of Parkinson's disease in addition cognitive impairment, fluctuations, hallucinations and psychosis due to an extension of the pathology beyond the brain stem into the cerebral cortex). Usually Alzheimer's disease presents with an insidious progressive short term memory impairment sometimes associated with word finding difficulties and spatial orientation difficulties in time. Lewy body disease can mimic Alzheimer's disease but often there is marked fluctuations day-to-day in addition to vivid dreams at night and some hallucinations. To complicate things further some patients with Alzheimer's diseaes can go on to develop parkinsonism (slowness, stiffness, poor balance, etc) that may not be due to Parkinson's disease but simply due to an extension of the pathology of Alzheimer's disease into the automatic centre for movement (basal ganglia). If someone has cognitive impairment and Parkinson's disease it can sometimes be difficult to control the medication in this setting. The Sinemet needed for the slowness of Parkinson's disease can aggravate confusion, vivid dreams and hallucinations. However without the Sinemet the patient can be profoundly slow and fall. If Sinemet causes confusion and hallucinations in the patient then a neuroleptic is usually required. However most neuroleptics aggravate parkinsonism. There are a number of exceptions which are called the atypical neuroleptics (Clozapine, Quetiapine, Olanzepine). Therefore in this situation often the patient is treated with Sinemet and an atypical neuroleptic as listed above in addition to medications like Aricept to improve cognition. Frequently in this setting we try and keep the medication as simple as possible using Sinemet for the Parkinson's disease, atypical neuroleptic (Quetiapine/Seroquel/Clozapine/Closarol/Olanzepine/Zyprexa) to block the hallucinations and acetylcholinesterase inhibitors (Aricept, Exelon, Reminyl) to improve cognition.

Heavy sweating at night time is often a "non-motor wearing off symptom" due to the Sinemet medication being low in the patient's system at the time. Sometimes increasing the frequency of the medication (provided the patient or caregiver can manage this) and perhaps the introduction of the slow release form of Sinemet before bed at night may offset this symptom.

Your question highlights a very difficult area of management of patients with Parkinson's disease and it often the patients and hopefully your father will improve with further adjustment of medication in consultation with the psychogeriatrician. Frequently close liaison with the Clinical Nurse Specialist in Parkinson's disease can be helpful in this situation in addition to ensuring constipation or infection (chest or urine) are not present.

Dr. Tim Lynch

Question 186

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Question posted December, 2007

Can the Chinese acupuncture help on reducing the effects of the Parkinson diseases? Or can it have a negative effect about the medicinal treatment?

Answer posted January 15, 2008

Chinese acupuncture has been shown to be very much of benefit for pain. There is no evidence based data to suggest that it can be of significant benefit in Parkinson's disease. However if your relative is attending a reputable acupuncturist it may be of some help in the short term for pain and muscle spasm. It does not have a particularly negative effect of medication effect.

Dr. Tim Lynch

Question 187

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Question posted December, 2007

I have recently been taken off cabasar as it has caused heart damage and am now taking Madopar HBS 100/25 (6) per day. Since commencing Madopar I have been experiencing episodes of severe sweating each day. During theses epidosed I feel most unwell and extremely tired for hours. I am post menopausal. Thanks, J

Answer posted January 15, 2008

It is worth monitoring and perhaps keeping a diary of the time of the day and which days you experience sweating. Sometimes it is apparent that the sweating occurs at the time when the medication (in your case Madopar) is at its lowest ebb indicating that it is a "non-motor" wearing off symptom. Therefore people sometimes experience sweating at night time or between medication doses. Obviously we look for other causes of sweating including menopausal symptoms, other medical illnesses such as infection or other medications such as antidepressant pills. Sweating is a very difficult symptom in Parkinson's disease and I have a number of patient for whom I have been unable to solve their problem.

Dr. Tim Lynch

Question 188

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Question posted March, 2008

My medication usually works quite well but over the last few months I have suffered a lot for about 12 days before my period is due. During these days my symptoms get a lot worse and I am extremely tired. I have tried taking extra medication on the advice of my GP but it doesn't make a lot of difference. Have you ever come across this problem before and if so, is there anything I can do to ease the suffering at this time without taking extra medication. I am desperate at this stage for an answer.

Answer