Thursday 8 November 2007
Testing times. I have taken steps to involve myself with other people with Parkinson’s this week and this has caused me worry and relief in equal doses. The first thing I did was join the forums on the PDS website and PDUK.org. The PDUK forum is excellent; a great group of people who know what I am going through. I’m glad I joined. I have learned a great deal about people’s lives with the disease and confirmed what I have been told by others that a positive attitude goes a long way to dealing with this.
On Tuesday I met my first PWP face-to-face. He is 44 and six years in. The bottom line is he is doing fine. I found it quite disturbing, you can’t help but extrapolate yourself down someone else’s path. An utterly pointless occupation. What I found disturbing was facing up to the difficulties of dealing with PD, not the possible outcomes. Whatever happens the years ahead are going to be tough and I need to prepare myself for that.
As a result of the meeting I was a bit down for a day or so. I got my lift back by taking positive action. I turned up for my gym appointment on Saturday only to find I had got the day wrong. It was rescheduled for Wednesday, the day after the meeting with the PWP, and I got a real buzz out of joining up and taking a positive step forward. A lesson learned – if something potentially damaging is on the horizon follow it up with something constructive.
Tuesday 20 November 2007
Things have been good for the last couple of weeks, I am doing so much exercise-wise I barely have time to write anything. The gym is going well, I had a fitness check which involved lying on the floor with a heart rate monitor attached, easiest fitness check I was ever involved in. This was followed by my gym induction. The instructor paid attention to my PD weaknesses and is intent on improving my fitness and core strength. And getting some beef off. My right side, particularly my arm, is very weak under tension. It wobbled quite outrageously when I was doing a tricep curl.
Since then I have been 3 times and mostly done rowing and running, I bought a heart rate monitor and it went off the scale when I was rowing! Felt fantastic afterwards mind you. I also did a spin class (static bikes in a room, loud music and an ubergruppenfuhrer shouting orders) which was sore. Had to rush home afterwards to let Vic go out and was late because I could barely walk. The next day was worse!
My physiotherapy is ongoing, she is doing a lot of stretching of my spine and neck to loosen it up. I feel the benefits of it but I think she pulled a bit hard on my jaw last week because it has been aching all week. I am trying to be realistic and believe it was the physio and not blame it on the spread of my PD but it is very difficult, it is always at the back of my mind. The skin trembles of a few weeks ago have gone which is a huge relief. Apart from my sore jaw, I haven’t felt this good in months.
This condition does have perks – I now qualify for a free flu jab and people with PD don’t get schizophrenia. Doesn’t make it worth having mind.
Tuesday 4 December2007
Cant believe how fast time is going. My sore jaw has finally subsided, it hasn’t gone but it has gone enough for me to be convinced it wasn’t PD related. I have also worried about a painful right arm (the day after a heavy gym session), swallowing, constipation and chattering teeth in the last two weeks. I am becoming very self obsessed. Which is another worry. I want to find out more about the disease but on the other hand when I do find out stuff I self-analyse for symptoms.
I have been on the Introduction to Yoga weekend in Glasgow. Great fun, I was soooooo inflexible. He told use to start off by kneeling down and resting our bum on our ankles. Couldn’t do it. He suggested using a yoga block or two if necessary to rest ones bum. Five blocks it took. Very embarrassing. Apart from that it was excellent. Very relaxing and physically demanding.
I am averaging 3 gym trips a week. I have bought a heart rate monitor and sports headphones both of which make the trips more bearable. I definitely feel fitter and the symptoms subside once my heart rate slows down!
I am in two minds about drugs and whether to start taking them when I see Dr Grosset. Not sure, there is so much conflicting information – some says start because if you don’t you are always playing catch up, others say the agonists are neuro-protective. The counter arguments are L-dopa brings on dyskenesia so delay as long as possible. My bottom line is I am in no rush. I feel healthier now than I have felt for a long time and want to enjoy it as much as I can.
I also struggle with the mental side. This isn’t a cancer, a foreign body inside me causing harm. It is part of me tidying away (or murdering depending on my mood) another part, the other part being fairly critical to my mobility. It is hard to focus my anger on anything. Needs more thought.
Sunday 30 December
Christmas has been and gone, and I feel the illness has definitely progressed but I feel happier and more in control now. The tremble is into my lower jaw, I am not so sure the sore jaw was physio induced, maybe she just brought it on quicker, but I think it was PD related. Quite a frightening realisation.
I have my appointment to see Dr Grosset – 18 January, the last few weeks have probably led me to the position where I think I need to go on the drugs. So be it. A number of people have said the drugs really do help but it can take six months to find a concoction that suits you. The same evening we are going to a Burns’ supper with friends. It will be good to have a distraction that evening.
The exercise goes on, I have been diligent in going to the gym, at least three times a week. My weight hasn’t really changed, but given I have been through Christmas and all that entails then no weight loss is no surprise. I attended my first Pilates class yesterday, very good. Very sore today and my tummy muscles were trembling of their own accord last night. Maybe PD, maybe not.
I found out at the office Christmas Party that more people know than I had told. Initially I was upset but in some ways it is a relief that people know. I spoke to the people concerned and it is done.
Christmas was fantastic. We went to N. Ireland for five days. We stayed with Dad and it was brilliant. I have put so much focus into getting through to Christmas, I was worried it would be an anti-climax, but it wasn’t. I was more worried about facing the weeks afterwards as I had been shutting them out from my mind, deciding to deal with them when they arrived. Well they have arrived and I feel in good shape to deal with them.
On Christmas Day Vicky, Chrissy, Dad and I went for a dip in the sea at Whitehead. It was very cold. It was something I wouldn’t have done, or thought of doing if it hadn’t been for my diagnosis.
My pal John from Southampton arrived today for New Year, he has had a shitty year too and I am really looking forward to having a blast and saying goodbye to 2007.