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

Please could you give me more information on operations for the disease where stimulants are inserted into the brain as I am hoping for this operation in Birmingham Hospital in the near future.

Sorry for the delayed reply. Functional neurosurgery for Parkinson's disease and other movement disorders is increasing. Insertion of electrical stimulators into different brain regions can decrease tremor, stiffness and slowness. The operation is often done while the patient is awake, although recently it has been done while the patient is fully asleep. The stimulator can be modified after the operation to maximise the benefit. It seems to be very effective for those patients whose medications fail them. However, there are small risks with any brain operation. Passing probes through brain tissue can result in a bleed/stroke (less than 1% chance). Also, infection can rarely occur. Suitable patients are carefully selected as these surgeries help some of the symptoms of PD but not all.

Best of luck with your operation.

T. Lynch

My mother is 65 year and she taking Madopar 250mg three time daily and she is diabetic. However the drug is not effective any more for controlling her parkinsonism as well she also complaining from uriniation, feeling stomach pain as rise temperature inside, can not depend on herself, not sleeping at night.

Levodopa (Madopar or Sinemet) is the most effective agent for PD. However its effect does wear off over time but usually not completely. To boost its action I advise patients to take L-dopa on an empty stomach, have grapefruit juice in the morning (increases l-dopa absorption) and ensure they are not constiptated (delays absorption). In addition I sometimes add Selegiline and/or Entacapone to increase dopamine availability to the brain.

Urinary complaints need investigation in PD. Urine infections worsen PD symptoms and insomnia can be a real problem. Sometimes I prescribe a LOW DOSE tricyclic antidepressant (e.g. Amitriptyline 10mg) to improve sleep; it often is very effective.

Dr. T. Lynch

What are the side effects? This person is very grumpy, and at times a difficult person with whom to deal. She is very lazy and complains a great deal about her problem. Thank you.

I am myself an orthopaedic surgeon. My father suffers from parkinsonism. He has feeling that he has some stiffness in his lower abdomen and feels that it feels as if his lower abdomen is tightly tied with a string. Parkinson's medicines do not help him for this stiffness. When the stiffness is more he has difficulty in walking and strangely when he walks some distance he feels the tightness becomes less. He has problems in describing this symptom as some times he relates this to his urinary problems saying when he walks a long distance he passes good amount of urine and the abdominal tightness gets better. He had prostate examined has mild prostate hypertrophy. Many thanks for answering this difficult question.

Difficult problem. Sometimes PD patients get abdominal stiffness/cramps as part of a wearing off dystonia or "on" dystonia. Perhaps your father could keep a diary of when he gets the stiffening episodes in relation to the timing of medication, eating, walking, etc. Doing this over a week may show a pattern. I have had a few patients with similar complaints that resolved by decreasing their dopamine agonist or L-dopa.

Dr.T. Lynch

My daughter has had recurring bladder infections her whole life. She is now 11, when she was 5 she had reimplantation surgery. We have been to see Dr. Steinhardt of St. Louis University. for the past several months. My daughter's bladder is really huge. We have found out that her bladder is not emptying all the way. While she will void 300cc's or more she would still have over 100cc's.

Today after having a VCUG(I believe) done he determined that her sphincter muscle needs help. He has suggested to give her a botox injection. I'm really concerned of this. I have tried to do some research and are unable to find anything on this. He has told me that the only other treatment is to put in a catheter permenantly. I don't like that idea either. Can you help me in any way? With research or suggestions. He is wanting to do this ASAP.

I am not an expert on bladder function and therefore it is difficult to comment. However Botulinium Toxin is a very effective toxin that decreases muscle spasm in a reversible manner. Therefore if the injections do not work or if they cause a problem it will reverse over 3-4 months.

Prof. Clare Fowler is a world reknowned expert of the neurology of bladder function. She is based in London.

Dr. T. Lynch

I was recently watching a CBS program and it detailed a new type of treatment for Parkinsons........my Dad has Parkinson's and lives in Ireland, and I was wondering if this is available there.

The report follows:

"Strides Against Parkinson's Disease

Does This Operation Work?
Morley Safer Reports

Feb. 21, 2002

CBS : Del Maxson talks with Morley Safer.

(CBS) Del Maxson's life became almost unbearable when his medication began to cause side effects as bad as the Parkinson's disease he was trying to control.

Uncontrollable body movements made him housebound and, in his own words, stuck in "a body that doesn't work." But now Maxson plays pool, buttons his shirt - even shaves himself - thanks to a surgical treatment just approved by the Federal Drug Administration for advanced Parkinson's sufferers, Morley Safer reports.

Surgery to relieve the symptoms of Parkinson's has been around for decades, but it has mostly consisted of destroying tiny parts of the brain. The treatment given to Maxson and approximately 3,000 Americans like him consists of stimulating the brain with electricity.

Electrodes are implanted into the sufferer's brain to deliver varying amounts of electricity, making the treatment adjustable as symptoms worsen. It's a distinct advantage over earlier surgical procedures, which were often one-shot propositions that were more dangerous to perform. The surgery is reserved, however, for patients with advanced Parkinson's, those whose drug treatment is causing serious side effects.

The patient must remain awake during the six-hour operation so surgeons can be sure not to do any harm as they go deeper into the brain. Results are immediate. They are also lasting; the first patients to receive the treatment eight years ago are said to be still doing well. Maxson says the procedure gave him a new life. "My perspective before the operation was Parkinson's was incurable and progressive, kind of a dark future that I had," he says. "Now I've got a future."

Cleveland Clinic doctors on the team that operated on Maxson say the operation, called deep brain stimulation, doesn't always work as well for everyone. Some patients may not do as well as someone like Maxson.

Some may even do better. Mark Sharp was also suffering from the debilitating effects of advanced Parkinson's and, he too, received the operation at the Cleveland Clinic. Doctors there boast that Sharp was able to compete in a triathlon soon after the procedure."

Functional neurosurgery for PD is not yet available in Ireland. Mr Chris Pidgeon (Consultant Neurosurgeon) and myself run a combined neurosurgery/neurology clinic at Beaumont Hospital to identify suitable patients for surgery. Unfortunately because of lack of funds and other factors we have been unable to offer surgery yet in Ireland. We hope this will start shortly. In the meantime I refer suitable patients to the UK for surgery. It is important to emphasize that most patients do not need surgery especially early in the disease and can be managed with lifestyle change and medication.

Dr. Lynch

My husband was diagnosed with benign essential tremors 2 years ago by a neurologist who barely examined him. He initially gets the tremors in his right hand and finds that if he eats something sweet it goes away-however if he doesn't catch it in time or if he is exhausted from working long hours at work the tremors tend to go through his body however generally the food takes affect and he becomes completely still again. His brother and father have similar symptons and they have been told that it is a sugar/energy related problem.

I would like to know if what my husband has does sound like the benign essential tremors as I know very little about them, also what treatment is available and if they could potentially get worse.

Thank you very much.

Benign essential tremor is a familial tremor that is present with posture holding (e.g. holding an object) and is increased by action (e.g. eating soup, putting a key into a lock, drinking from a cup). It is often made better by holding the cup with 2 hands or by drinking alcohol. It is made worse by stress, anxiety or fatigue. I have not noted if hunger or low sugar makes it worse but I cannot recall specifically asking the question. Treatment is difficult and often unsatisfactory. It the tremor is disabling it is worth trying Propranolol (Inderal) or Mysoline (an anti-convulsant) provided they do not cause excessive side-effects. Generally benign essential tremor usually slowly worsens but most people are not disabled by it. It is hard to comment on whether your husband has ET but the relationship to food is unusual. Dr Lynch

My Mother has had PD for the last ten years Her medication is as follows:

1. 4x250mg Madopar
2. 1x150mg Madopar(controlled release)
3. 1x150mg Madopar (dispersable)
4. 6mg cabergoline
5. Also uses (needle) syringe driver apomorphine, 12 hours per day.

• Over the last six months there has been a dramatic weight loss.
• Also, my Mother is falling several times a day.
• She is also feeling sickly.

A difficult problem and question. Your mother has a complex medication regimen probably with a number of side effects (nausea, weight loss). It is very difficult to comment in this situation as I will often admit a patient with complex PD to methodically change the medication one at a time. The nausea and poor appetite might improve if she takes Motilium 10mg half to one hour before every pill/injection.

Apomorphine, Cabergoline and Madopar can all cause nausea and poor appetite which can be blocked by Motilium. Other anti-nausea medication (Maxalon, Stemetil) should be avoided as these worsen the PD.

Dr. T. Lynch

I suppose that I was upset by the diagnosis.It was ' ... perhaps early stages of PD .....Selegiline twice a day.'...full stop.

Now I find the following:

• Worsening symptoms - mainly unsteadiness.
• Fatigue.
• Frequency of urination.
• Sudden disimprovement of eyesight.
• Stiffness.
• Walking difficulty.

PD can behave differently from patient to patient. Most find the condition grinds along SLOWLY. Selegeline is thought to slow the progression of the disease but should be taken before lunch or it can interfere with sleep. Freqency of urination, sudden worsening of eyesight and early unsteadiness are not the norm in PD. I look for other causes such as urine infection or a local eye problem. Increasing stiffness, fatigue, walking difficulty and unsteadiness do creep along over years but not usually over one year. Understanding and accepting the diagnosis is very difficult but it is important to be aware that people can and do live a full life.

New breakthroughs - A recent study showed that stem cell transplant in mice does work and result in less "parkinsonism" but some animals developed tumours - more work needed.

Dr. T. Lynch

I am finding it very difficult to find information on Hemiparkinsonism Hemiatrophy that is not statistical in its content and I am finding also it difficult in making contact with other people who may also have this condition. Can you help with these two questions?

As I stated in my reply to a question on 23/1/02 this is a very rare condition. There are little statistics available. If you wish we could forward your email to the other person with hemiparkinsons hemiatrophy - providing they are agreeable - or contact PALS directly.

Dr. T. Lynch