Dear Sir, I have this SYMPTOM which I would like to describe to you. I assume you are the appropriate person to ask such a question. The symptom is horrendous and hence extremely unnerving and I would greatly appreciate any light you can shed on the matter. Strikingly, I have already received an opinion from one other ""Web Neurologist" which intrigued me into watching "Awakenings" with Robert De Niro and Robin Williams.

In a nut-shell : MY BODY SLEEPS WHILE MY MIND IS AWAKE. The result is me feeling WALKING DEAD quite frankly , and I also get breathing hindrances - unease. My sleep pattern is all over the place. My body feels very STIFF. When I overdo it other symptoms appear : tremor , head jerks for example. DOES THIS SOUND LIKE ENCEPHALITIS LETHARGICA? I have been diagnosed with CFS/ME/CFIDS but this symptom is "new" in that I may have had it before during previous evaluation in which it manifested itself as "severe somnelence" but now it is interfering with my sleep pattern/sleep-wake pattern due to my resuming my routine /obligations, i.e.living again, the distinction is there to be made. Does this sound typical of encephalitis lethargica , or of post-encephalitic parkinsonism?

Thanks

Sorry for the delay in replying.

Your symptoms do not sound like those seen in encephalitis lethargica (parkinsonism with marked immobility and stiffness, that responds to L-dopa). Stiffness, irregular breathing and somnolence can sometimes be seen in PD or encephalitis lethargica. However they are not the cardinal features. You should discuss your symptoms with your physician as a detailed history and examination can often guide diagnostic testing for conditions like sleep apnoea, ME, etc etc.

Dr. Lynch

My mother has Parkinsons......she is in much pain (legs, back,). Is it common for Parkinsons to cause pain?

Sorry for the delayed response.

It is not uncommon for PD to cause pain. Early on people can complain of aches down one side, a frozen shoulder or cramps. Later side effects from L-dopa can result in "off" or "on" dystonia (twisting, cramping of feet or hands). The stiffness (rigidity) of PD can also cause aching in limbs or trunk. However it is important to exclude other common causes of pain (arthritis, osteoporosis with bone fractures, etc) before blaming PD. Your mother should discuss her pain with her doctor to pinpoint its cause.

Dr. Lynch

Why does Parkinsons disease occur? I am a student that is researching this disease and I can't seem to understand why it occurs. I do not understand the process or the symptoms of the diagnoses. Why does it seem to effect people in strange ways? All the research I've done has not helped me on my questions. Please help me this might help me in later in my life. I do not know any one around me that has this disease. Therefore I can not ask people about this disease.

I am 14 years old and doing a report on this disease and researching the disease for the last month and still have not found answers to my questions. Can you help me? If you have any other web sites that I can research on please let me know.

Sorry for the delayed reply

You are not alone in not understanding why Parkinson's disease (PD) occurs. If you find out you may win the Nobel prize!!

There are many theories and hypotheses. The likeliest mechanism is that the person:

• has an inherited predisposition to developing PD and
• is exposed to an envirnomental trigger that starts a cascade of events resulting in death of dopamine producing brain cells.

Once a critical number of cells are lost, the lack of dopamine in the brain interferes with automatic movement causing:

• slowness
• stiffness
• tremor
• stooped posture
• freezing of gait and
• imbalance

I am a 25 yr old mum of 3 and for the last three months I have had severe headaches and twitching of my right hand,as well as a shudder like someone walks over my grave. I also stumble with my speech and suffer pain in my right wrist. Do you think i should see a doctor; could these be early signs of Parkinsons?

I think that you should see your GP regarding your concerns. PD is extremely rare at the age of 25. Also headaches are not particularily associated with PD. I think seeing your doctor and expressing your concerns and anxieties would be worthwhile. He/she can then assess you for any underlying medical condition.

Dr. T. Lynch

My medication no longer works all the time. I try to watch when I eat so there is some time between pill time and eating. I also watch my protein and dairy products so I don't know why it doesn't kick in.

Anyway, I am wondering about the deep stimulation pacemaker operation. My doctor, who is a professor in movement disorders tells me that I am probably a perfect candidate for it, but she thinks I should have it done within 2 years and she wants me to check out different clinics.

I am ready now because it bothers me a lot when I am off. It used to not bother me to much but the last 2 years I feel like I am going downhill fast. I am to the place where I am almost afaid to leave home by myself. Also I am wondering where I will be in a few years if I don't do something major!

So please, I need lots of info on the operation and especially on the results - actually chatting with post surgery patients would be most beneficial.

Sincerely

The decision to go for DBS surgery belongs to the person with PD having received guidance from their doctor. Therefore it seems you are in good hands as you have a specialist as a doctor. I am not in a position to advise whether you need surgery as that requires detailed assessment in person - your doctor has done this.

DBS surgery developed over the last 10 years and looks very promising. Speaking to someone who had the surgery is very worthwhile - again your doctor may be able to arrange this or your local PD support group.

Finally, choose a centre which has experience with this form of surgery as the more they have done the better they will be.

Best of luck

Dr. T. Lynch

My mother is at the stage of being very forgetful and confused ( not remembering her tablets etc). She is on Sinemet, 5 daily. Is there any other form of treatment that would improve or slow down the rate of the onset of forgetfulness??. What extent will this process go to , i.e., how bad will she become, and should we be preparing to provide 24 hour observation and care?

Thank you

All difficult questions. They really need to be addressed by your GP and neurologist as each patient is different. Cognitive impairment is relatively common in PD but can be aggravated by some of the medications, e.g. Artane. Therefore it is important to assess any PD patient with memory problems very carefully looking for other medical problems or medication side effects. Some forms of forgetfulness respond to acetylcholinesterase (eg Aricept, Exelon) medication but this has not been shown in PD. PD can sometimes merge into another related condition called diffuse Lewy body disease (DLBD). DLBD is characterised by hallucinations, fluctuating confusion and memory loss and parkinsonism. Without seeing your mother it is hard to comment further.

Dr. Tim Lynch

My Mother was diagnosed in November with atypical parkinson'. You have given the answer to what is atypical parkinson's but I do not understand the answer. Since mom was diagnosed and started her course of medicine all the pain she had been suffering from for years - she had a couple of accidents (she was in a bus crash and had a lot of back pain and then had a bad fall) - is gone. The only symptom that she was showing was a tremor in her right hand, and since she has started the medication the pain has gone and the tremor hardly ever appears. Oh and she lost about 4 stone but she looks and feels realy good in between bouts of depression. My niece who is 15 years old has started to have a tremor in her arm she is complaning of pain and is very tired all of the time. Would it be possible for her to have parkinson's ? Thank you for your time. I look forward to any help you can give me. Yours truly,

It is very rare for teenagers to develop parkinsonism (tremor, slowness, stiffness, imbalance, stooped posture, freezing). There are many other more likely causes of tremor, pain and tiredness in a 15 year old. For example familial essential tremor (Katherine Hepburn had this mild condition) can start in the teens.

Atypical parkinsonism does not usually respond well to L-dopa (Sinemet) so your mother's improvement is heartening. It is hard to comment further on her diagnosis. However tremor and pain alone would not be enough to make the diagnosis of parkinsonism - atypical parkinsonism usually is symmetrical, with slowness, stiffness, early falling or freezing, difficulty looking up or down and poor response to L-dopa.

Dr. Tim Lynch

Can you tell me some information about the history of essential tremors. I am doing a report and a speech for my senior classes. My Father has essential tremors and I would like to know a little more about the history and any other information that could be helpful.

Essential tremor is the commonest movement disorder. It is characterized by a postural and action tremor of the arms and hands at 6-12 oscillations/sec. It involves head, voice, rarely legs and arms/hands, can be asymmetric, eased briefly by alcohol or holding the two hands together. Up to 4% of the population have ET and it increases with age. It can run in families and two genes have been located to chromosome 2q and 3q.

Dr T. Lynch

What is atypical Parkinson's?

Parkinsonism can consist of two or more of the following symptoms or signs:

stiffness, slowness, tremor, imbalance, stooped posture and freezing of gait.

The commonest cause is idiopathic Parkinson's disease (e.g. Michael J. Fox, Pope John Paul II, Janet Reno).

There are many other causes of parkinsonism and these are grouped under the term atypical parkinsonism, e.g.

stroke, progressive supranuclear palsy, multisystem atrophy and corticobasal degeneration.

In general they are more complex, complicated and less responsive to treatment.

Dr. T. Lynch

I have not been officially diagnosed, but after my last sleep apnoea test it was noted a lot of leg movements while I slept. It was after that test my physican prescribed Carbodopa/levodopa. When I learned that is the medication prescribed for Parkinson's I questioned the doctor about this and he said it was to relax my legs and no, not Parkinson's.

When I attended a support group at the senior center here for Parkinson's and was asked about why I was there and I told them I was not sure and wanted to see what it was all about since I am receiving that medication, Once they learned of it I was immediately accepted as a new member and I received literature about it monthly.

There is a lot of resource information going on . I am thankful I do not have it as bad as some but I woulld also like to prepare mysellf for any future problems with it. I also noticed when people see this medication listed they highlight it for any emergency medical problems. I can handle it if it is; I just want to be ready. It may help me when other things happen and I am not ready for them. I do hope you can help me on this.

Restless leg syndrome (night walkers syndrome) is a very common disorder that responds to levadopa and other medication. Therefore patients often take levadopa even though they do not have Parkinson's disease.

Sometimes PD is associated with restless legs or other sleep disorders. The diagnosis of PD is based on a careful history and examination looking for slowness, stiffness, imbalance, stooping, freezing and rest tremor. Taking levadopa does NOT make the diagnosis.

Dr. T. Lynch