The question I am most often asked is “how did my Parkinson’s disease start?”
This is my first blog entry, telling the story of the year from first noticing something was wrong and getting the diagnosis of Parkinson’s disease.
It started towards the end of 2006, there was a tremble in my right arm which caused some irritation when trying to use a mouse, pressing the wrong button, deleting entire paragraphs, that sort of thing. I booked an appointment with a locum at the local surgery and he did some tests and came to the conclusion it was nothing to worry about.
Months went by and the tremble got slightly worse and started in a minor way in my right leg; additionally there was some pain in the arm. People at work noticed and told me to ‘Sort it!’ so I booked into see my regular GP in July 2007.
The GP saw something.
She held a finger up and I had to reach out from my nose and touch her finger with my right hand. My arm wavered as it travelled to her. This raised a suspicion in her mind and she decided to refer me to a neurologist. In addition she referred me for x-rays to check for mechanical damage.
When she said this I was shaken; I was thinking Parkinson’s and she asked me what I was thinking. I skirted around the answer by saying I was afraid I would have something that I will have for the rest of my life. Her view was that it was unlikely to be something sinister, which was true; it was statistically unlikely to be something sinister.
I phoned Dad and he told me to go private. The arm and leg tremble combination was worrying him.
Typically, when the appointment came through I was due to be on holiday so I rearranged the appointment. I wasn’t worried, the holiday was great and I was looking forward to the neurologist putting my mind at rest.
On my return from holiday I saw the GP, on Monday 13 August. The x-rays were clear and showed no mechanical damage to my spine. She said the Consultant may decide on doing a scan as it is non-invasive. She felt the wobble could be treated, but she wanted to wait until the consultant had given a view.
On Wednesday 15 August I saw the Consultant Neurologist at the Nuffield in Glasgow. I went in quite happy and came out shattered.
It was the first time Parkinson’s was mentioned by someone with full knowledge of this illness. He went through my symptoms and did some movement exercises. He said the symptoms were not typical of a benign essential tremor and it could be PD. He said it would be highly unusual for it to be PD in someone of my age. Which is of course different to saying, based on what he had seen, that it would be highly unusual for it to be PD. He wanted to do an MRI scan to rule out MS, a scan which he ‘fully expected to come back clear’. He also wanted me to have a SPECT scan or DATscan which was the best scan for testing for PD. He was silent on what he expected to see in the SPECT results! Whilst the MRI scan can be done privately, the SPECT scan is an NHS service and you have to wait your turn. A four month wait lay ahead.
I cried that night. My wee girl was starting school the next day and the whole event was over-shadowed by this potential catastrophe. The next day was hellish but I convinced myself that I didn’t have PD and life was fairly normal within a day or two.
The following Monday I had the MRI scan. The scanner doesn’t look alarming until you lie down and they put a mask on you. I could choose music to listen to; I chose REM as I didn’t want to associate anything I liked with this unpleasant device! I was in for about fifteen minutes. The consultant phoned the following Monday to confirm everything about the MRI scan was clear which ruled out tumours and MS.
Nothing much happened for a few weeks. My right arm got stiffer and more cramped. The tremor remained fairly minor.
Wednesday 5 September 2007 was when I first really suspected PD. My arm was in poor shape and I wanted some answers. Unfortunately I looked for those answers on the internet.
The internet is, in general terms, a fantastic resource, however, it can be a bit too factual. Some of the medical resources read like the leaflet you get in a packet of tablets, entirely factually correct in that all the possible side effects are listed but not really representative of the reality of taking the drug. Wikipedia’s entry on PD is like that. Scared the shit out of me. There is no comfort to be found on that webpage.
I spoke to Dad and told him my fears. I think the realisation hit him that night too. Vic and I barely slept.
Thursday was grim. I faxed the Consultant and asked him to call me and be blunt. He phoned and said he was suspicious it was Parkinson’s Disease but was not “absolutely certain and was not just waiting for the results of the SPECT scan to confirm it was PD.” I heard the entire sentence but only took in the words ‘absolutely certain’ and ‘Parkinson’s Disease’! He said he would try and get me a cancellation for the SPECT scan.
I left the office at 12 and went home. Vic was on her lunch by the time I got home so I had to wait until she returned to her lab before I could ask her to come home. I couldn’t bear the thought of being alone. Whilst I was waiting I decided to tell my brother, Gareth. An awful call. As I type this I am welling up again. I could only tell him my suspicions. As always, he had good advice. When I hung up I called Vicky and she headed home.
Whilst I was waiting for her the phone rang. It was the Consultant’s secretary. There was a cancellation for the SPECT scan that day for 3pm. That phone call was a blur. The secretary must have thought I was a bit simple as she had to repeat everything for me.
Vic arrived home and we dashed to the SGH. Someone looks after me, if I hadn’t called Vicky to come home I would have had to go on my own. I cried most of the journey but was composed when we got there. The nurse injected me with radioactive goo and sent me away for 3 hours. We went for lunch and picked up Beka and dropped her home. Vic’s brother Richard came over and did the necessary with the kids.
We went back to the SGH for SPECT scan (Simon and Garfunkel) and then went home for another poor night.
On Friday 7 September I was diagnosed with PD. At my request the Consultant phoned me with the result, at 11.53am. I was surprisingly calm. I expressed my primary concern that I would be able to work for the next 15 years. Given the nature of my work, he felt this was likely.
I phoned Vicky and my Dad and decided to go home. Before I left I told my boss, who was shocked and extremely supportive. I walked towards Vicky’s work and she met me half way. A hug I will cherish for the rest of my life. We drove home and I embarked on a series of phone calls to my brother and sisters which would change the lives of a lot of people. Chrissy was first, then Jen, Gareth, Karen and Ruth. Shock and sympathy, and lots of tears from me.
Gareth was on his way to see yet another sister, Tizzy, so he told her that night, as I didn’t want to phone her at school. I also told the in-laws; Anne, Martin and Richard.
The support and love I received from everyone touched and humbled me. I felt, and still feel very undeserving of it. The burden of this setback, and that is what it is, is being carried by a lot more people than just me, and that is a relief.
That Friday was a difficult day, the hardest I have ever gone through. Tears were shed in buckets.
By far the worst aspect was not knowing what having PD means. I had waited months to find out what I had but once I knew I was none the wiser.