Year 2 – Remain clumsy, some new meds but so far so good

I was not going to write for a while but a number of people have said that my previous post helped them/was interesting so I have decided to keep it up. It is good for me as well – it helps me think and get perspective. Those who don’t want to read….feel free to delete/ignore.

So what’s changed…

First let’s start with the good news (and it is mainly good news)

I remain as positive as I have been (most of the time). By and large the PD is under control and I am living a normal life (as normal as can be in this period). My family including our 6th member ‘Buddy’ remain a source of love, energy & entertainment for me and things at home and at work are basically ‘as is’ which is excellent. We try to laugh about PD and talk about it freely which helps. My neighbours and friends are great (although some of the suggestions for therapies have been interesting (and many I have adopted) including the anonymous person who said I should try ‘Paracetamol’ which I have not taken on board:-)) and I have a PD friend – someone I have known for a while who is (very unfortunately) at a relatively similar stage of the disease who is good to speak to. I retain my faith which tells me this is for a reason (although I have no idea why?)

I continue to be inspired by listening to the stories of those who fight every day to hold PD back and I’d like to be a fraction as committed as them e.g.

and

https://www.bbc.co.uk/sounds/play/p08163th – both real role models for me (from a distance)

I continue with the same routine of daily yoga, acupuncture, daily walking/jogging, healthy diet and physio. I have added Boxing (a PT once a week through the awesome Rock Steady Boxing) so it is busy!

I continue to work hard and this is good for me – I have even done my first foreign trip for 3 days (I used to fly approx twice a month) which went ok (I had to pack with a lot more care than before taking the right meds and yoga stuff) . My cognition seems to be ok which is totally critical.

I have been working to try to improve and regulate my sleep – I am/was averaging less than 4.5 hours a night consistently and waking up at 3-4am most days. Sleep CBT was recommended by my specialist and it is starting to help – last week for a 5 hour average.

I continue to be clumsy and drop things although all my family will agree that this was the same since I was a kid. A few weeks ago, I managed to impale my forehead into a tree branch whilst walking the dog (no seriously) which is similar to an incident many many years ago when I walked into a lamppost in London and actually said ‘Sorry’ to it. I guess that qualifies me as a Brit.

The slightly less than great news but expected is that my PD is progressing. Aside for continuance of the current symptoms (see last blog) such as my handwriting (which has really got worse e.g. writing birthday cards for the kids was genuinely very hard), my arm has developed an interesting and very extreme shake but only when my arm is clenched and reclining at about 45 degrees in an arm chair (strange). I have also started to have some very minor uncontrollable twitches/jerking in my leg but this is really really minor.

More worrying to me is a ‘startle response’ where, when surprised by a sudden noise I have on a number of occasions (double digits) screamed very loudly for a couple of seconds and scared myself and others. With this in mind and having met my specialist I decided this week to start Levadopa. It was a drug I emotionally wanted to avoid for as long as possible. I had heard many times that Levadopa was for later as its efficacy is 7-10 years and understand some of the side effects. In reality I managed 18 months without taking it but I have started 3 days ago and so far so good :-). The dose is very low and the modern research seems to be strongly in favour of taking it earlier with future options including DBS – Deep Brain Stimulation. For those interested, I am staying on the same dose of Sifrol, Azilect and Amandine and gradually reducing and weaning off the Dekinet.

So basically – I am doing ok and on some days totally normal. Despite my firm faith, I do of course worry about the future – as a control freak by DNA I am really not happy with being dependant on people for the basic needs I have but as there is nothing I can do about it, I try not to let it impact me. I will admit though that it does play on my mind and I have been pretty active in thinking about future finances etc as it is possible/likely that I will retire from work much earlier than I hoped. But apart from this, the future is not my concern and to be honest we all have uncertain futures.

I echo the messages in the links above – I start each day with a clear mission to get on with it, have faith and do what I can to fight its progression. I also – as advised – try to not let it take over my life – I have to treat if as part of life.