Part 4: I walked unaided to the bed
I will never forget the sensation as I slowly got down from the operation couch and walked unaided to my bed nearby and marked time with my feet. There was an air of jubilation in the room. I lay down on the bed, hardly believing what I had done, and was pushed back to the main ward - an hour later than expected.
Marie looked relieved when she saw me waving to her as I arrived into the ward. Marie, Brian and Roger and two of Marie’s cousins, Breda and Mary, had travelled from Birmingham to Bristol to see me and be a support to Marie.
Shortly after returning to the ward, I was taken away for another MRI scan to check the brain for bleeding or other damage; it was clear, no damage, everything was OK. I felt elated that I was now able to move more freely, but exhausted from the long day of continuous activity. My head was painful from the four bolts that had been inserted into my skull, and my hair was matted with blood, but otherwise there were no other signs of the surgery. Mr. Gill came to see how I was progressing at about 6 p.m. and he was pleased with the outcome. I had a good nights sleep that Friday night.
On Saturday morning I was more alert and beginning to realise the full impact of the operation. I could move quite well but was still very tired and sticky from the heat. I was allowed to have a supervised shower but no water was to go near my head. It was a strange feeling; I knew that I had undergone brain surgery. but could feel no pain in my head. Only the location where the bolts had been was painful to touch. I could see no scar to satisfy myself that I was healing although I had been told that the brain would be swollen and would take a few weeks to settle back to normal.
I know it is strange, but if there had been some way for me to see how I was healing and to see the state of the brain, I would have understood the instructions not to be too active to soon! This was difficult because I was getting more excited as the day passed, and as two friends from London appeared walking down the ward they could not believe the sight of me walking around fairly relaxed. In fact the other patients in the ward (none with PD) were surprised and delighted for me.
The change did not fully hit me until I went to the toilet by myself without the problems I was having the previous day. It was a benefit I did not expect, but on its own it was fantastic not to have to use mechanical aids to do what is natural to most people. Mr. Gill and his team were also surprised and delighted with the extra benefits from the surgery.
That Saturday afternoon after Mr. Gill had finished some routine tests with me, I asked his permission to go out of the hospital on Sunday to a local tavern with my family to have dinner. He agreed and wished me a nice day out and to enjoy myself.
I was awake from early on the Sunday morning lying on my bed looking forward to the day out. At about 11 a.m. Marie came walking down the ward towards me with the Sunday newspaper under her arm, alone. Alone with Marie, I thought of nothing else from the minute I saw her waiting for me when I arrived back in the ward after the operation an hour late. I knew she must have been very worried because she had not been given an explanation for the delay. Marie had gone out to get the newspapers and decided not to go back to the guesthouse that morning but came over to see me instead. I lay on the bed and Marie sat on the chair beside me.
It was a fantastic feeling, one I still get emotional about every time I think of it. We sat there quietly, in our own private space, delighted with ourselves, glad that the surgery appeared to be a success. The operation is not a cure; it relieves the severe symptoms of long-term use of medication. It is not known how long the benefits of this procedure last, perhaps two to four years, perhaps more.
Not long after Marie had arrived, Roger and Brian came to take us to the local tavern for dinner. The family wanted me to take the wheelchair or my walking stick because it would take twenty minutes to walk to the tavern. I did not take either the chair or the stick, as I wanted to walk over to the tavern unaided. I just wanted someone to walk close to me, but not to touch me. I could concentrate more on my walking and my balance that way.
My ability to walk at steady pace, and in a relaxed way, surprised them. It even surprised me! At the tavern we had a nice lunch and I had a half pint of beer to drink before we set off back across the park that surrounded the hospital. I think they were watching me all that morning while I was walking, anticipating something that might happen, but happily didn’t.
Considering that I had the surgery only two days earlier, I was more than pleased with myself. There was a feeling of disbelief within me; I was quietly excited but not really sure that this was really happening to me. I could now walk again; something I had taken for granted at one time, could not understand why I couldn’t walk at another time, and then after surgery being able to walk again. I enjoyed every minute of that day, from the morning when Marie arrived at the hospital alone with the Sunday Newspapers, and she sat by the bed and we talked, to the walk to the tavern and back to the hospital.
On Monday 11th May, I was discharged from the hospital and we arrived home in Dublin about 9 p.m. The whole family had come to Dublin Airport to welcome me home.The look of expectation and of apprehension shone from them as I walked out of the Arrivals area pushing a folded wheelchair and walking fairly steady. Elated and feeling much better arriving home than when I was going to Bristol, I was driven home, and I felt very pleased with myself.
It was lovely to wake up in the morning and be able to get out of bed and walk to the toilet, not to have to crawl and meet the bowl face to face first. During the following weeks I received many telephone calls from people with Parkinson’s disease asking about the success of my surgery. It became clear to me that there was a need for a support group for the young people with PD, because it was always understood to be an elderly person’s illness. I had one telephone call from a lady who had been diagnosed PD the previous week, she wanted to talk to some one who had PD, but not to meet them in fear that she might see someone at a more advanced stage of PD. She was 43-year-old teacher, with 3 children and had been forced to retire because of PD.
Before my good luck with the surgery I was a member of the committee of the Parkinson’s Association of Ireland with an interest in meeting other people in my age group with PD. The number of younger people who contacted me was instrumental in my co-founding PALS with another man with PD of a similar age group.
PALS “Parkinson’s Active Liaison and Support” were formed as a branch of The Parkinson’s Association of Ireland in November 1998. In our three years of existence, we are still totally a voluntary group, offering support to people with Parkinson’s disease, their relatives and friends. We held a sponsored walk in May 1999 and raised funds to get a dedicated PALS telephone in my home. I can redirect calls to other members of the PALS committee
In this way the line is open seven days a week from 10 a.m. to 11 p.m. A PWP (Person With Parkinson’s) or their carer, who is well informed about PD, will answer it. We keep in touch with members by telephone or e-mail on a regular basis. Our newsletter, which is set and produced on our home computer, is sent to our seventy members who are spread throughout Ireland. We have regular meeting in Dublin, with guest speakers from the medical profession and support services and we have started local area support groups in Kerry and Donegal.
Our latest project is to assist in the fundraising needed to help in the setting up of a a multidisciplinary clinic (a Clinic of Excellence) for Parkinson’s disease. PALS have been very supportive financially in the training of a Parkinson’s Nurse Specialist, the first one in the 26 counties of Ireland. Now our aim is to have a clinic opened and the nurse appointed to it.
On my first day back to work, while I was parking the car, I noticed a group of colleagues standing nearby. Before the operation, upon getting out of the car, I normally made my way back to the boot to get the wheelchair. There was air of quietness when I locked the car door and walked towards the entrance of the building without wheelchair or stick. The look of surprise and disbelief on their faces was unbelievable. The word “surprised” does not even come close to describing their reaction. They were fascinated, curious, disbelieving.
I continued working for another twelve months, and one Tuesday I was told that I should seriously consider retirement, in order to get the benefit of the improved quality of life I and my family had enjoyed since the surgery. I thought it strange that I had been working from a wheelchair prior to surgery and now that I was walking again I should be advised to retire!
It has taken me a while to come to terms with retirement, but looking back at it now I should have retired sooner. As chairman of PALS Relatives and Friends I devote a lot my time to the fulfilling the aims of our small group.
I went to a professional counsellor on the advice of the PALS committee because of the number of telephone calls I was answering, and the situations and anxieties of the people on the other end of the telephone line. To my astonishment, the counsellor’s assessment was that I should consider doing a counselling course to accreditation level. He and my consultant neurologist give me great encouragement, as does my wife Marie (PALS Treasurer). After considerable deliberating, I now hope to start a professional course in October 2001.
Since my forced retirement Marie and I have had a few weekends away in the countryside to relax and enjoy our new quality of life. Our three children have grown up and are fine adults. Our eldest son, Simon is a Chartered Accountant and a University Lecturer. Brian is a nurse with specialties in paediatrics and qualified as a Parkinson’s Disease Nurse Specialist. Anne is the youngest of the family at 19 years of age and works in the airport for one of the Airline Companies. She has successfully completed courses on airline procedures with Trans Continental in America is doing well in her work at Dublin Airport.
This year, 2001 I fulfilled a lifetime ambition, to go on a cruise holiday! Our cruise took us to seven different countries over a period of fourteen days. It was the holiday of a lifetime for both of us, as we had not been away alone together on holiday since we were married in March 1971. It was a long time since I ventured away on holiday without a wheelchair as a backup. I did plenty of walking during that fourteen days, up hills and down dales, had my good days and no so good days. We take the good with the bad and enjoy every minute of our new quality of life. We are both 55 now and are enjoying life together while making up for lost time.
I have plenty to be grateful for. I would not tell anyone with PD to go for surgery. It is a very personal decision and can only be taken with the advice of the neurosurgeon and most of all by the person concerned. I can honestly say that at this moment the surgery has improved my quality of life by about 80 per cent. The “misdiagnosis” in gone from my mind. I take one day at a time and enjoy it as much as I can. I am a lucky man and fully appreciate my very caring and supportive wife, Marie, family and friends.