My brother came to visit me about ten days ago. He had a foetal transplant four years ago. His symptoms now are "on/off", with "offs" lasting for hours. He is getting terrible cramps in his legs, which is not usual; nor is their intensity. He is also suffering anxiety and panic attacks. It has been like this only since the trip began. We would be very grateful for advice.

It is difficult to comment on the best approach to all of the problems without knowing his medications or medical history.

Cramps in the legs often occur as the medication weans off ("off dystonia"). Switching off for hours can occur when the medication is poorly absorbed because of constipation (change of diet while travelling). If he is constipated this should be treated.

The anxiety and panic attacks often occur as the medication switches off.

Overall it may be wise to have him assessed by your GP or Neurologist

Dr. T. Lynch

Please tell me if there is a connection between off-time and bladder irritability (frequency) which occurs in the evenings

This is not a common complaint. If somebody has urinary/bladder symptoms and Parkinson's Disease it is important to ensure there is no urinary infection. Some forms of parkinsonism can result in bladder dysfunction. Sometimes these symptoms respond to antispasmodic agents if required.

Dr. T. Lynch

I seem to have a great deal of pain. Is this a normal thing with this sickness? I have the tremors and weakness and depression real bad. I hate this sickness. I am so tired all of the time. I guess it could be the medicines too. Waiting for your answer.

Pain can commonly be the presenting symptom of PD. Often it occurs down one side and can be relieved by the medication, stretching, heat or massage. In addition pain can result from an associated frozen shoulder or other musculoskeletal problems.

Low mood and depression can also be an initial symptom of PD and is very common at some stage during the disease. It results from the low dopamine levels in the brain and as a reaction to having a progressive disorder. It should be treated as it interferes with sleep and quality of life. Often we can use a medication (e.g. Amitriptyline, Nortriptyline) that treats both pain and depression.

The tiredness and fatigue of PD probably occurs from many causes including the disease itself, poor sleeping, side effects from the medication and depression.

Dr. T. Lynch

I am writing on behalf of my father.

The current medication mix is as follows:

1. Eldepryl - 5mg in the morning
2. Requip - 1 mg three times daily
3. SinemetCR - twice daily
4. Sinemet 110 - twice daly
5. Sinemet Plus - one at 12 noon

• The first four medications are taken in the morning.
• Sinemet Plus and Requip are taken at midday to cope with fatigue at 12 noon.
• Another SinemetCR is taken at 3pm to bridge the gap until the final dose of medication at 6pm.
• The effects of the SinemetCR seem to wear off after 3-4 hours.

The question is: do you think that any changes in the drug pattern may give better results, and does the am dose appear to be a little excessive (although it does seem to work)?

Sorry if this is a little grey and if you need further details I'll be sure to get them.

Thanking you in advance

Firstly, adjusting medication in PD is difficult and should be done slowly. The rule is one change at a time and only change medications with the knowledge of your doctor.

Secondly, it is difficult to comment on an individual patient's medication regimen without seeing the patient first. However, there are some general comments. Wearing off can be improved by a number of means -

1. Increase the frequency of Sinemet while keeping the total dose of same, e.g. half pills can be used sometimes.
2. The dopamine agonist (in this case Requip) could be increased to maximum allowling the Sinemet dose to be kept low, e.g. Requip can be slowly increased up to 15mg per day.
3. Entacapone (Comtess) can be added to lengthen the action of Sinemet.

What treatment did Billy Graham have?

I do not know what changes were made to Mr Graham's medication. However, patients with long standing complicated PD may often improve following a two week admission allowing rapid change in medication while under close observation. In addition daily physiotherapy, occupational therapy and speech therapy often helps.

Dr. T. Lynch

Dear Dr. Lynch:

I am taking Mirapexin for about two months, and have gained about 6lbs in weight which has resulted in an expanded waistline. Because of some problems with nausea, I am eating less, and so I am wondering if Mirapexin can lead to weight gain.

If so, would you recommend using a diuretic, or is there any other solution?

Thank You.

I have not seen many patients note an increased weight while taking Mirapexin. Usually in Parkinson's disease people have difficulty maintaining their weight because of a higher metabolic rate. The nausea associated with the use of dopamine agonists (Mirapexin, Requip, Celance, Parlodel, Symmetrel) can usually be eased if you take the medication after eating. If this fails then Motilium 10mg one hour before medication can usually resolve the problem. I would not recommend using a diuretic as this can lead to both electrolyte difficulties and indeed postural hypotension resulting in fainting and lightheadedness on standing. As the dopamine agonists can also cause postural hypotension, the combination of both can lead to fainting. Therefore if you had a good response to Mirapexin I would encourage you to continue it and try and increase your exercise regime to lose a few of the extra pounds. If however the Mirapexin has little effect then consideration of switching from it to an alternative dopamine agonist would be reasonable.

Dr. T. Lynch

I am having some trouble in the bedroom.

It is difficult to know how to answer this question without knowing whether "trouble in the bedroom" refers to a man or woman. In Parkinson's disease it is not uncommon for libido to be decreased in the same way that motivation and initiative are. In addition many of the medications including the dopamine agonists (Mirapexin, Requip, Celance, Parlodel, Symmetrel) and the anticholinergics (Artane), Eldperyl and Sinemet can lead to impotence. If a patient develops impotence shortly after starting a medication I usually advise for this medication to be weaned off and stopped. If however the impotence persists even in the face of medication alteration the use of Viagra can be considered. There is no contraindication to Viagra in Parkinson's disease and indeed there was a recent report noting decreasing dyskinesias with its use.

It should be noted that some of the atypical forms of parkinsonism can present initially with impotence followed later by the stiffness, slowness and poor balance. This reflects involvement of the autonomic nervous system in these more complex disorders.

In women "having some trouble in the bedroom" usually refers to libido difficulties or dry vaginal secretions secondary to medications such as Artane.

Dr. T. Lynch

My husband has been having symptoms for about 6 years, but the general practitoner neglected to take it seriously. I accidentally came across a neurologist, who is doing the brain scan to eliminate other possibilities. I feel sure it will be PD. What is the life expectancy?

He has progressed quite rapidly this last two years. He makes up wild stories, and I can't believe anything he says. He has periods of total confusion which last about a half hour. I am afraid to leave him home alone because I don't know what he'll do. Last summer he ran the riding mower almost over a cliff. I am concerned about how soon he should be institutionalized, and how I'll be able to save my house, etc. I am working part-time mostly to force him to wait on himself. The kids advised me to do this. He will get me to do everything for him, if he can, i.e. tie his shoes; start his car; and wait on him. He'd rather not move, and send me to bring him everything. What time frame am I facing? Should he wait on himself? I'm unable to decide. I don't want to mistreat him, yet I feel that if he doesn't move much, he will petrify. Yes?, or No?

Thank you.

Parkinsonism can be caused by different disorders. The commonest is idiopathic Parkinson's disease. However there are other forms that are sometimes associated with confusion early in the disease course. Therefore it is not possible to comment on life expectancy and prognosis without knowing your husband's exact diagnosis. In general, patients with all forms of parkinsonism should be encouraged to be active and manage their daily chores and activities.

Dr. T. Lynch

My mother has PD. I have done a lot of investigation on the treatments available and the best possible way to manage the disease. I myself suffer from diabetes and think that the monitoring of PD and its responce to medication is similar in many ways to the management of diabetes.

I understand that sinemet is absorbed in the small intestine and I am curious to know whether or not there is any form of a sinemet pump available, which would act in the same way an insulin pump works. (programed to release measured meds at appropriate times via an intravenous tube attached to a small device worn by the patient.)

This would be a terrific asset to those who find it difficult to remember to medicate themselves or for those like my mother who suffers confusion as a side effect of her medication.

Thank you for your time.

Yes, there are a number of ways of giving continuous infusion of L-dopa -

1. You can dissolve Sinemet or Madopar in water and vitamin C and "top-up" every now and then instead of taking pills.
2. Some investigators have used a nasogastric tube into the duodenum and given a continuous infusion of liquid Sinemet or Madopar.
3. A subcutaneous apomorphine pump is available to be used instead of Sinemet or Madopar.

(From a patient) I was wondering why I get so completely fatigued when I am with more than one other person. Being in a group of people just knocks me out.

Patients with Parkinson's disease can manage one problem or conversation at a time only. Dealing with multiple problems or conversations involves switching one's attention or concentration back and forth and this is very difficult in PD. Perhaps this is why you get so fatigued.

Dr. T. Lynch