I am writing on behalf of my father. He was diagnosed with Parkinson's disease in October of Last year. Since then he has been seen by his GP and he has moved from one drug to another. His symptoms have been severe sickness, headaches and with no significant increase in mobility.

My sister has attended a Parkinsons conference in Dublin where I understand she has spoken to you and explained my fathers case and you advised a referral letter from my fathers GP. My fathers GP has written referral letters, a doctor who treated him in Wexford Hospital has written a referral letter.

However, he still is awaiting confirmation that he will get an apppointment with your good self. I find it so disheartening to see his hopes raised (along with my families) for him to sit another month and so on in discomfort with severe immobility.

He was a very active man, he is only 57 years of age, he does his exercises, has adjusted his diet however what he really needs is the expert diagnosis of a Neurologist who can individually review his symptoms and tailor his drugs as appropriate.

I feel he is beginning to lose hope and cannot see a light at the end of the tunnel, because he has moved from so many different tablets and so quickly, his stomach became raw and he was very sick.

Please explain to me what the process is for referral as I understand there is a waiting list with 6000 patients and so few Neurologists in Ireland, but I think it will be heartbreaking to see my father reaching the anniversary of his diagnosis in October without yet receiving the necessary treatment. (Coincidentally, he probably had PD for about 2 years before he was finally diagnosed as he had assumed it was Arthritis and probably didn't want the doctor to say otherwise).

Thank you very much for your time.

Thank you for this question which illustrates nicely the problems we have here in Ireland with neurological care. There are 11 neurologists in Ireland (1:350,000 population). This provides the lowest ratio of neurologists per head of population in all of Europe. Denmark, with a similar population, has 180 neurologists. Hence patients wait an inordinate amount of time to see a neurologist. This is unsatisfactory.

The neurologists, as a group, have been agitating and canvassing the Department of Health to appoint more neurologists. The Minister of Health's response to date has been to set up a committee to look into the matter. We await their report. I believe pressure from people with PD and the support groups can influence politicians. I would encourage all who have been frustrated by the Irish health services to write to and cajole their TD and the Minister for Health.

With regard to your father - presumably I have received a letter(s) and have passed it on to my secretary for an appointment. This hopefully should be soon as we have started a speciality PD clinic weekly at the Mater. If you drop me a note with your father's name and address and I will determine what has happened to the referral letter(s) and speed up an apppointment. (The Mater Misericordiae Hospital, Eccles Street, Dublin 7).

Dr. T. Lynch

I suspect my husband has depression associated with his diagnosis/lack of dopamine. How do I get him to recognise this. I feel his mental condition could be much improved by receiving treatment for this aspect of Parkinsons. He gets very anxious about trivial things and tends to pick up on all gloomy news. from what I read these can be symtoms of depression but how oh how do you get the individual to face up to this fact. His medication is 1 eldpryl tablet each morning.

Thank you for all your good advice, your question and answer page is very helful.

Anxious spouse

A difficult issue. I think it is important for the doctor to explain to people with PD that low dopamine in the brain can not only result in the slowness, stiffness, tremor and imbalance but also low motivation, slow initiative, low mood and a lack of joie de vivre. If these symptoms interfere with the enjoyment of life then they should be treated with antideprsesants, many of whom increase dopamine in the brain. However it can be difficult for someone to recognize and accept that they are depressed or anxious. I don't think there is any easy way other than cajoling and encouraging the person to gain insight into their anxiety and low mood.

Dr. T. Lynch

Dear respected sir:

I am very glad to write this letter to you. I would like to inform that my father, aged 57 years, is a Parkinsons patient for the last 17 years His main symptom is rigidity and he has severe dyskinesias also.

He underwent deep brain stimulation last year in the month of July. This was performed by doctor Yheo from Singapore, but unfortunately there was not much change in his symptoms.

I would be glad to get more information about this disease and how it would help my father's condition from deteriorating. I would like to know if deep brain stimulation is effective for patients who have rigidity as their main symptom.

thanking you

My apologies for the delay in replying.

Deep brain stimulation can be used at different sites with the brain. The site for the DBS is selected depending on the patient's need. Rigidity oftens responds to DBS of the pallidum and subthalamic nucleus. Tremor responds to DBS of the thalamus and less so pallidum. Sometimes adjusting the stimulator is required post operatively to maximise its benefit.

There are no definite treatments to slow PD. Selegeline may slow progression and in general staying mentally and physically active does seem to keep patients in good health.

Finally a health diet (green vegetables and antioxidants) is probably important.

Dr. Lynch

Will Mirapexin stop my hand tremors in conjunction with Sinemet CR?

Mirapexin has been reported to be of benefit for rest tremor in Parkinson's disease. Therefore it is often worthwhile trying it or other dopamine agonists (eg Requip or Celance) in addition to Sinemet. Rest tremor is usually the most difficult symptom to treat in PD.

Dr. T. Lynch

Both my father and grand father have deen diagnosed with PD. It has furthered to Alzheimer’s in my grandfather. Are either of these conditions hereditary and if so how do I go about getting tested for this condition?

PD does have a genetic contribution. There are a number of families where PD has been passed from generation to generation, this is very rare. Commercial testing for these disease genes is not available yet. However there is a great deal of research into the genetics of PD that we hope will lead to new treatments and even a cure! I have a research project ongoing looking at the PD genetics if you are interested.

Alzheimer's can also rarely be passed on in a family. Again four genes have been identified that when mutated lead to AD. Commercial testing for these genes is not yet available in Ireland.

Overall the risk of inheriting PD or AD is low. Therefore we do not usually advocate testing for these genes except in exceptional circumstances. Anyone who is asymptomatic and wants testing for neurodegenerative disorders will have to have genetic counselling beforehand to address the many implications. This counselling is available via the National Genetic Centre at Crumlin Hospital.

I have received treatment over 10 years now for PD, with good success. However, in the past 6 months I have developed pre-menopausal problems and am awaiting specialist advice from a gynaecologist.

Coinciding with emergency treatment, Primolut N Tabs 10 mg TID, I am having a big problem in the evenings where my two feet become very cold and then proceed to feeling dead and really heavy. Sometimes, I am only able to take really small baby steps when this happens. Could this be due to interaction with drugs, or is this the dreaded "off" affecting my feet?

That is a difficult question to resolve for many reasons. Firstly hormonal change can often affect parkinsonism - some women note increase tremor and stiffness premenstrually. Therefore at the time of menopause (with or without HRT) the changing hormonal blood levels can result in new symptoms. These symptoms may disappear once the woman is in stable doses of HRT.

However it is possible that you are developing wearing "off" late in the evening. There is no need to panic because with medication adjustments this can often be resolved.

Dr. T. Lynch

My mother was diagnosed in 1986, and since then my aunt(her sister) has got it. Their brother died in 1982 with motor neurone desease but also developed symtoms of PD. I am 31yrs old and I'm curious about the chances of getting PD myself.

is there a test I can get to find out if I will get it too?

PD is rarely a familial disease. There are two known genes that have been identified that can cause PD. Testing for these two genes is commercially unavailable. Sometimes motor neurone disease and parkinsonism can co-exist in the same person. However the parkinsonism of PD is usually different to that of motor neurone disease/parkinsonism.

The genetics of parkinsonism is an area of research that I am interested in. If you wish to partake in this research(brief questionnaire, brief neurological assessment and a blood sample) you can contact myself or my research registrar, Dr Joe Wiley at 8034544 (Mater Misericordiae Hospital).

Finally the risk of somebody getting PD when family members are affected is low as it is a complex disorder, i.e. it probably requires a genetic predisposition and an environmental trigger.

Dr. Lynch

Catherine experienced serious RHS shoulder and arm issues and lower back issues over the last 7 or 8 years. During this time she was working in a very stressful environment. In May 1998, with differing opinions from Neurologists and Neurosurgeons, she was operated for lower back discectomy and there remains some cervical trauma. In 1995/96 her RHS large toe had begun twitching and she had to mentally 'talk' to it to have it stop only to have it begin again after a while.

Today she is slower of movement and stiff in gait and medicated Mirapex 0.75gms x 3 per day plus 1/4 of Sinemet 100/25 every morning plus 20g Prozac in the mornings. This approach 'manages' somewhat the symptoms of RHS leg shaking especially as she attempts to use her RHS fine hand movements. She also takes a vitamin supplement which more or less stabilizes her bowel movements since she has been subject to serious constipation for many years.

We believe that the PD is related throughout all of this period, perhaps even a little longer, say since her early 50's. Catherine remains very active but is continuously pre-occupied with thoughts of dying and not enjoying her 7 grandchildren as they grow. I understand that there is no predictability but, given the time intervals, the complexity of back issues and nervous system impacts, the low (in my opinion) level of medication to manage symptoms and a healthy life style, she is re-assured as best as possible that the 'end' is not in sight.

Since we speak of moving to Ireland within a year or two as part of our retirement plan, your work is more than of passing interest to us and to our Irish family members in Dublin and the West.

Therefore is such re-assurance realistic?

Could such a person be a qualifying candidate for embryonic treatment?

It is difficult to say without knowing more about their definite diagnosis. Assuming she has the relatively benign form of parkinsonism - idiopathic Parkinson's disease (IPD) - then she should indeed do well for many many years. People with the tremor predominant type of IPD often worsen very slowly over decades. It is important that PD patients be aware that PD is not a death sentence - something else will get them in the end! It is also important that they know that the low dopamine levels in the brain lead to low motivation, initiative and sometimes depression. These symptoms sometimes need treatment as much as the tremors, stiffness and slowness.

Finally I assume you mean foetal cell transplant by "embryonic treatment". This recently has been shown to result in excessive dyskinesias (wriggling, excessive movement) in younger PD patients and is not effective in older patients. It is likely this form of treatment wil not be a therapeutic option in the future. However, use of stem cells in transplant work may happen and other forms of neurosurgery (thalamotomy, pallidotomy, deep brain stimulation) are effective in CAREFULLY SELECTED patients. Catherine may be a suitable candidate for these surgeries provided she has had a FAIR trial of medical treatments.

Dr. Lynch

My question is that, being family members, how can we help a PD patient at home along with the treatment at hospital?

Is 100% treatment of this disease is posible?

My management approach to a person with PD is staged.

I discuss in detail why and how somebody gets PD. Also I discuss how they can stay well physically and mentally. I think it is important the family are part of this discussion so they too can understand the disease and be aware that the person with PD is not an invalid but may need a certain amount of help with specific things (not all).

I think it is important that the person with PD takes an active role in looking after their health by adjusting diet and lifestyle. For example increasing green vegetables and antioxidants in the diet and adopting a regular exercise regimen. Also they should stay mentally busy.

The family can be of great help in encouraging, cajoling and stimulating their PD relative to stay active and busy while at the same time not becoming overprotective. They should be aware that people with PD can live a very productive busy life like anyone else.

Dr. Lynch

My Father was diagnosed with this disease. He has been on medication. (Levodopa, Requip etc.) The point I am worried about is that he has lost a lot of weight (30 pounds) and now is 110 pounds only.

Also the effect of the medicines is not as it used to be before. Is there any other alternative than medication?

Weight loss is common in PD. However 30 pounds is excessive. Calorie supplements may be required in PD to maintain weight. I would suggest you discuss this with youru doctor to ensure there is no other cause.

Other treatment approaches in PD include exercise, physiotherapy, speech and language therapy, occupational therapy and sometimes functional neurosurgery. Overall treatment needs to be modelled for the individual - different cocktails of medication suit different people and some people are suitable for neurosurgery, others are not. Therefore treatment for your father needs to be adjusted to suit him.

Dr. Lynch