I first developed some left leg discomfort. I thought I had nerve root pressure, probably L5, just before we were about to go on holiday to Zimbabwe, in 1991. This settled and I had an enjoyable holiday. In 1995 I decided that I was too heavy and needed to lose weight. I reduced my calorie intake largely by cutting fat and carbohydrate. I also started jogging and competed at a low level in some 10K races. I lost 2 stones in 2 years.
When I was running, one of my daughters commented that when I ran I moved my left arm much less than my right. Pursuing this I found that my shoe wear was asymmetrical and that I scuffed the front of my left shoe. By 2000 I had a slight limp when I walked, and had cold sensitivity affecting my hands and feet. I also had some hypertension, treated with beta blockers, and some haematuria with urinary frequency and urgency, and Duypuytron’s contracture, worse on the left side. The motor function of my left side gradually deteriorated and I became increasingly fatigued.
In 2003 I was working as Clinical Director and Consultant Orthopaedic and Trauma Surgeon and I went to see a consultant neurologist whom I knew, who agreed with my diagnosis of Parkinson’s, and the diagnosis was supported by the results of SPECT and MRI scans.
Comment
People always ask “When did your Parkinson’s begin?”. It is extremely hard to be precise. The list of possible symptoms is so extensive. Was my leg pain in 1991 related to my PD? The old physicians’ observations were very shrewd. I wonder how many orthopaedic surgeons presently consider PD as a possible cause of shoulder pain, or of loss of manual dexterity as exemplified by diminishing guitar playing ability? I for one certainly did not.
Initial reactions
My initial reactions were probably fairly typical of most professionals:
1.“Why me?”
This is not helpful! Faith and religion may offer comfort, but not therapeutic opportunities.
2. Denial
I think there are two aspects. Firstly, denial that the diagnosis is correct.
Comment
This is where the SPECT and PET scans are so helpful in providing strong support for the clinical diagnosis. I think we have become so used to the editors of medical journals not accepting clinical observations as evidence that we need a body of investigations to support the clinical diagnosis which is correctly made. Whilst it may be argued that PET and SPECT scans are not by themselves diagnostic of PD, I think they are very persuasive evidence, and that one or other should be done when the patient is a clinician.
The second aspect of denial is denial of the prognosis and denial of the fact that at present there is is no known treatment which prevents the continuing loss of brain cells in the basal ganglia and elsewhere. I initially trawled the literature extensively. In my queries I was extra-ordinarily well served by my general practitioner, who patiently discussed with me papers from conference proceedings whose titles had been written mainly with a view to ensuring continued research funding.
Most apparently hopeful leads turned out to be isolated reports about work on laboratory animals. Most of the work on stem cells emphasised the vast number of factors which had to be evaluated before they could be used reliably in clinical disease. Even an orthopaedic surgeon with a strongly empirical approach could see no work that seemed terribly hopeful in the short to medium term.
Initial treatment
My initial treatment was started at the local neurology unit and rapidly handed over to the Movement Disorder Clinic. I started ropinirole, which certainly helped my motor function, but caused me to be very nauseated, a symptom which was reduced to squeamishness with domperidone. I have returned to ropinirole after trying various alternative dopamine agonists, and am grateful for the slow release Requip XL, with which I have no problem with nausea.
One of my orthopaedic colleagues suggested I would limp less if I used an AFO (ankle splint), and I found its intermittent use helpful for prolonged standing and walking.
Work
After a couple of months I returned to work, where I was met by the Unit Administrator who said he had discussed my return with my successor as Clinical Director and they had decided that I could do outpatient and clinical work but not operate. I could under- stand this and did not contest their decision in any way and pursued early retirement through the Personnel Department. I was granted early retirement when on annual leave. I said I would prefer to work the last four weeks before retirement in order to wind up my clinical work. The irony of the whole situation at this time is perhaps best summarised by the comment from Personnel that I could do so if I wished, it did not matter to them.
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Continued medical treatment
I was enrolled in a clinical trial of Sanofi SR567667B which continued for about two years. I had PET scans at the beginning and the end. I do not recall any discussion of the scans, but the trial ended and I was informed that the drug was ineffective in preventing progression of the disease.
Comment
I sought involvement in this trial and certainly found the resulting increased contact with the local nurse specialist very helpful. I think all medically qualified patients should participate in trials whenever possible.
The route to surgery
At the end of the trial my tremor, walking, and urinary frequency had all become worse on the maximum dose of ropinirole, and I started Sinemet: and then propanolol which I stopped because it made me too sleepy. At this time I was unconvinced that selegiline made any difference.
Drug therapy was getting rather cumber- some by orthopaedic standards, and I came to appreciate my neurologist’s approach and opinion that one change a fortnight was enough.
I had been reading about deep brain stimulation for Parkinson’s disease. It seemed to me that the results at that time indicated that the best results showed sustained improvement for about five years. By now I had a great respect for my neurologist’s opinion, so I asked him the question “If he were me, would he consider DBS?”. His reply was “Yes, he would, let’s get a surgical opinion.” I asked him if it were not a little scary, having someone poke around in his mid-brain for several hours to which he replied “Not nearly as scary as having a hip replacement”…so off down the road towards surgery I went.
Surgical treatment
The local neurosurgical unit had at that time done only a handful of cases of DBS for Parkinson’s. At this point a number of things came together. Firstly, I had been involved in some research follow-up at my old university. Secondly, a friend of my daughters’ had worked for Medtronic, manufacturers of the commonest stimulators. The advice from both sources was to see the same surgeon and I ended up under his care as a participant in the PD Surg trial.
I was admitted for assessment to the neurosurgical unit in October, three years after initial diagnosis. Fortunately most of the assessment was done by the excellent specialist nurses, as the neurologist was on annual leave. My luck held and I was allocated to the early surgery group.
The unit was transferring to a new unit and after several cancelled dates I was admitted for surgery in April 2007.
All the surgery was done on the same day. I have three memories of it. The first is being asked to move my hands by the surgeon, the second is being transported around many corners for a scan, and the third is having a sore throat after the anaesthetic.
After surgery the next morning was incredible. For the first time for several years I felt as if I did not have PD. I was warned this effect was temporary. A few days` later the first settings of the stimulator were made. About five days post-op I went home.
About 10 days after surgery my scalp wounds leaked suddenly and extensively over the pillows.
This occurred again the next night. I was concerned about infection. I phoned the unit where my surgery had been done and was advised to come to the unit forthwith. I got there at 10.00pm on a Sunday night. The Registrar had changed and suggested a couple of sutures and a guest house. The ward staff had informed the surgeon I had not turned up. The bacteriologist said there was no point in plating a wound swab. Not a good day.
I was allowed to stay after the staff nurse argued with the registrar that there was a lot of discharge from my wound, and did he know that I had just retired as an orthopaedic consultant.
Comment
Over the period of my investigation and treatment I became firmly of the opinion that you should tell everyone that you are/were medically qualified. I think it is unfair on the staff not to, and it explains some of your attitudes and opinions. It also helps to get the systems to work on your behalf.
My wound settled after a course of i/v antibiotics, and has remained healed since that time. The bacteriologists remained unhappy. I have some sympathy with their position, but from a personal point of view, I would rather have a course of possibly inappropriate antibiotics than a cerebral abscess with a cultured organism.
Postsurgical course
My tremor has been virtually eliminated since the operation and this fact alone has enabled me to continue doing assessments and committee work, and to continue to travel and drive. In summary, my quality of life has been enhanced for at least three years by the surgery. In addition, my medication has been reduced to about half its pre-surgery level.
What has not been affected by the surgery are the autonomic symptoms, like cold sensitivity, and urinary frequency. I did not suffer any loss of balance or deterioration of speech after my operation. My overall motor function has been main- tained by skilled adjustment of the stimulator settings every six months or so by the PD nurse specialist at the neurosurgical unit, who has been looking after me. I no longer walk for pleasure, but I remain independent, and my upper limb motor function is adequate for using a keyboard, writing, and using hand tools for car maintenance and DIY.
Comment
I am extremely grateful to the medical professionals who enabled me to undergo successful DBS. In a progressive disorder it has enabled me to improve my motor function and so continue to do the things I want or need to do.
Also important for someone like myself, I now feel that I have tried every line of treatment open to me.
Lastly, I must thank my wife and daughters for their tolerance, encouragement and support all along the way.
