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

My Nan has had PD for a few years now, but it has been relatively controlled by taking Simenet. However, recently her memory and confusion have been getting worse, and about 1month ago she went through one of her more forgetful periods and didn't take her medication for approx 1-2 days. Following this period she went into what we were told was a PD Crisis and was in a form of coma for 2 days.

Once she started receiving her medication again she did come out of this, but her movement was severly impaired to the point that she had much difficulty swallowing.

A week later a urine infection set in and again unbeknown to the nurses she was not taking her medication properly and again slipped into a coma (PD crisis we were again told). Again, she came out of this once medication was re-started.

However, since then she keeps slipping back into the coma like state, even though she is getting her medication. The doctors are completely baffled by this as in a PD crisis patients normally respond to medication and at least regain consciousness.

This has been going on now for 3 weeks and we are getting very concerned. Have you ever come accross a PD crisis that does not respond to normal medication, or is there perhaps something else that may be getting missed due to the 2 recent PD crisis episodes ?? (NB - she has had a brain scan for a stroke & this has definitely been ruled out.)

I would be grateful for any info you can provide, as my Nan is deteriating daily & the Dr's are now saying that unless we place a tube into her stomach, then she will not survive much longer. Though we obviolusly do not want to put her through this if she is not going to get any benefit from it.

Thank You

A difficult situation. Abrupt withdrawal from levodopa can result in profound muscle stiffness and inactivity and even fever and coma (neuroleptic malignant syndrome). This is often aggravated by urine infections, constipation, pneumonia or other medical illness. Therefore in this situation her doctors will be trying to improve all her medical problems as best as possible whilst minimising any procedures if possible. Sometimes insertions of a PEG can maintain nutrition to a patient and get them through a crisis. It can be reversed later.

However if your Nan was developing memory loss and confusion before all of these events then there is another possible cause. Diffuse Lewy body disease can present with PD but go on to develop hallucinations (flurid visual images), marked fluctuation in alertness and disability day to day, limb jerks (myoclonic) in association with memory impairment and parkinsonism. DLBD is difficult to manage but patients can improve with good medical and nursing care, anti PD medication, avoidance of sedating medication (e.g. neuroleptics, benzodiazepines) and the addition of acetylcholinesterase agents (e.g. Aricept, Exelon, Galantamine).

This is a very complex problem and I hope your Nan rallies through the crisis.

T Lynch

My husband was diagnosed as Parkinson's patient in the year 1990 when he was 36 years old. He has been taking different dosages of Syndopa (L-dopa + Carbidopa) since then. The Doctor has tried other drugs like Selegiline, Bromocriptine, Requip etc. from time to time. The effect of the medicines was very little so the intake of the drug increased. He had developed severe dyskinesias in all limbs and even torso.

On 30th March 2001 he underwent "Deep Brain Stimulation" and has two electrodes inserted in his brain with a "programmable pulse generator" fixed on his chest. The requirement of medicine has reduced to less than half. Currently he is taking Bromocriptine along with Syndopa- CR.

Recently he is facing a new problem i.e., twisting of his feet and toes. It is very painful and at times he finds it difficult to even walk. Do you think it is Dystonia? If so, please suggest what can be given to help him. He has been prescribed Olanzepine 5mg tabs twice a day. In fact, he has taken it only for two days but is finding it very difficult to wake up. Is it the effect of the drug? Please help.

Thanks

It sounds like dystonia of his feet and toes. Dystonia in PD can be "on" dystonia (when the medications are working well and often associated with dyskinesia) or "off" dystonia (when the medications are not working, e.g. early morning or if wearning off). Keeping a diary of when the dystonia is present would help to determine which type your husband has. If he has "on" dystonia them changing or decreasing his syndopa-CR may help. I often switch patients to regular l-dopa (e.g. Sinemet Plus 25/100) rather than the slow release in this situation. If he has off dystonia (e.g. early morning) I get the patient to drink dissolved l-dopa (e.g. Madopar dispersible 62.5, or crushed Sinemet/syndopa in orange juice) first thing on wakening. This usually blocks the cramping. Finally Amantadine (Symmetrel) can often ease dyskinesia and dystonia when added. Also adjusting the DBS may help.

T Lynch

I would like to know if you know of any YOPD support groups near Chicago, IL.

Your answers are both helpful and appreciated. I would also like to identify any Neurologists in this area who specialize in Young Onset PD, can you drop a name or two?

Thank you so very much.

Thank you for your kind comments.

Rush Presbyterian has a specialist interest in movement disorders.

1. Christopher Goetz
   Professor of Neurological Sciences
   Rush Presbyterian St Lukes
   Chicago
   312-942 4500 (work)
   
2. Cynthia Comella
   Associate Professor
   Rush Medical College
   312-942 4500
   
3. Kathleen Shannon
   Associate Professor
   Rush Presbyterian - St Lukes Medical Center
   312-942 4500

Hi doc. Here goes ...when I wake up in the morning and take my first medication(05.30) I go back to sleep and then wake up again at 06.15 to get ready for work. Some mornings everythings fine, but on some mornings, if I don't go back to sleep, I start to 'stiffen up'.This will last for about 20 minutes and during this time my left arm rises over my head and my lower back arches backwards. I cannot walk or indeed move so I just wait for the intense pain to subside, which it does. However, when this occurs, and has passed, I am left with a slight ache in my back and arm which is similar to an ache one gets from doing exercises.

Question.... Is this doing me any damage...to my muscles or back? Is this common... and how can I stop it?

By the way.... this arching and pain is not caused by getting up and moving around.....I just have to be awake and lying in bed.....this has also occurred during the day and in the middle of the night, if I can't sleep.

Also,(I could be wrong about this) it seems to occur after I have eaten a heavy meal, usually steak.

And lastly, could you please give me some advice on how I can put on some weight.

If I eat during the day I'm out of action for a few hours and in work this is not practical. Hope to hear from you soon.

You are describing dystonia of the arm and back probably due to "off" dystonic (the medications are low in your blood stream early am). This does not damage your arm or back but is very unpleasant. The reason steak brings it on is because steak competes with and blocks the absorption of Sinemet from the gut - therefore your blood levels drop and you get "off" dystonia. Usually a liquid form of l-dopa early morning stops these cramps, e.g. Madopar dispersible 62.5 one or two dissolved in orange juice or crushed Sinemet in orange juice. T Lynch

Does the Doctor have any information on the Glutathione Therapy? And if so, would he give it to his PD patients?

Glutathione is an amino acid that is found in high concentration in the brain. It has a role in controlling oxidative stress in the brain. It may destroy oxygen free radicals (toxins) that are generated during the production of dopamine. It is known to be low in the brain of patients with PD.

As there is no definite evidence that it is of help in PD I do not recommend my patients to take it as a supplement. However I can see the logic of this approach but the jury is still out on this issue.

T Lynch

My mother was diagnosed in early 2001 at which time she was a nurse of 30 yrs. As the year progressed, although I don't believe the Parkinson's progressed, her ability to do her job became diminished and hence she was forced into retirement. We now find ourselves seeking insurance before her cobra insurance period expires.

Which is my first question: how do we find insurance for a person in this situation? Do you have any suggestions for the depression associated with the disease.

I am not sure I can comment on insurance in the USA. It varies state to state and you will need to discuss this with her doctor.

Depression can be an early manifestation of the disorder and needs to be dealt with by the person quickly. I often use tricyclic antidepressants (e.g. Amitriptyline, Nortriptyline) as these improve night sleep and the mood. However they can result in dry mouth, constipation and forgetfulness and therefore have to be monitored. Sometimes I use SSRIs (e.g. Sertraline, Citalapram) but these RARELY can worsen PD. Finally most PD patients do not need antidepressants but do need encouragement and support.

T Lynch

My mother for the last six months has been suffering from shaking in her right arm/hand. At first I thought it was a trapped nerve in her shoulder which sometimes you can see jumping and then this causes her arm to shake. Its not continual - if she holds her arm straight out it doesn't shake but if she bends it say to pick up something it will shake. She is terrified at going to the doctors therefore I am asking you in the first instance. It has gradually got worse over the last two weeks and the shaking seems to be more violent. I know unless you see the tremor it is hard to diagnose anything but could it be likely that this is the onset of Parkinsons?

It is difficult to comment on this problem without seeing the tremor (as you state). Tremor in PD is usually when the person is at rest, ie hands in the lap resting on a chair/table. The tremor is eased with actions initially. Your mother's tremor seems to clear as she does something - ie action tremor. Familial essential tremor occurs with action and posture holding (arms outstretched). Therefore your mother's tremor seems to be neither one nor the other. She should see her GP.

T. Lynch

Father in law originally diagnosed with cataplexy/narcolepsy 1 yr ago...movement disorder and loss of muscle control profound. Placed on Dexedrine 30 mg with little effect on movement disorder. Last 3 months increase in loss of muscle control, hesitant movement and increase in panic attacks. Anxiety and fear of going out lest he lose control and be unable to walk. Admitted to hospital recently ago with sx of severe panic attack. shortness of breath, sweating, anxiety, increased episodes of *cataplexy*. Chest xray revealed cardiomyopathy (not present during cardiac workup 1 year ago prior to starting dexedrine) and the neuro who dxed him and put him on the dexedrine originally (and had not seen him since...14 months) finally saw him today. he has declared the anxiety, sweating, palpitations, panic and cardiomyopathy have nothing to do with the dexedrine, or his narcolepsy/cataplexy.

The family is wondering if perhaps the dx was missed altogether as the dexedrine did nothing for his movement disorder. Cardiologist took him off the dexedrine immediately (!) and has him scheduled for angiography early next week, but feels it is likely medication related. He wonders if he had been worked up for Parkinson's. He was a a high-level employee of a large company before this hit him, sharp as a tack (and still is betwen spells). Could this be some presentation of Parkinson's?

I understand the shortage of neurologists in Ireland, but where can we direct them for help as they are getting the brush off as is. (No repeat polysomnography or sleep latency test, no trial of other medication, no other diagnostic tests) Is Parkinson's often originally misdiagnosed?

I would hate to think we may have to bring them to Canada to find answers (in his current state he can not travel well) or even the UK, but will do so if we can find him the help he needs.

Thank you so much for your help,

My apologies for the delay in replying.

I am sorry to hear of your father-in-law's complications and sad story and hope he has improved over the last few weeks. PD usually presents with combination of rest tremor, stiffness, slowness, stooped posture, imbalance or freezing of gait. It can sometimes commence with low motivation or constipation or depression. However it does not present with cataplexy or narcolepsy (PD patients will often note a change in sleep pattern or dream pattern).

I am unclear what "movement disorder" your father-in-law has. Often a videotape of the movement disorder can be reviewed by the neurologist/movement disorder expert even if the patient is unable to travel. I should say that the neurologist at St Vincent's Hospital, Elm Park, is excellent and has a particular interest in movement disorders. His opinion is well regarded. I suspect that the physicians are dealing with the urgent issue (cardiac) first and then will return to address the movement disorder and "narcolepsy". St Vincent's Hospital also has expertise in sleep disorders.

T. Lynch

My father-in-law was diagnosed nearly two years ago, but seems to have the disease for about 7 to 8 years. When firstly diagnosed he started taking Zelapar (1.25 mg) for approximately 1 year. For the past six months in conjuction with Zelapar he is taking Mirapexin (0.18 mg).

It appears that Mirapexin seems to be the cause of drowsiness during the day. The question is:

Is there an alternative to Mirapexin, which will not cause drowsiness?

Sorr for the delay in replying

Dopamine agonists (e.g. Mirapexin, Requip, Celance etc) can all cause drowsiness - indeed there have been reports of people falling asleep while driving. If your father finds the Mirapexin improves his Parkinson's perhas decreasing the dose during the day and increasing it at bedtime might help. He could discuss this with his doctor. The alternatives to Mirapexin include Celance, Requip, Cabergoline, Parlodel, Symmetrel, etc.

T. Lynch

I am looking for information on haemorrhoids - not sure of the problem I have but everytime I pass solids I bleed. The skin on the outer side of my anal passage which is now quite sore. It's quite an embarrassing problem and I would like to avoid going to my GP.

Bleeding from anus/rectum should always be assessed by your doctor. I would recommend you see your GP - he/she will be quite used to dealing with these issues.

T. Lynch