thinking about friends
thinking about friends

Whats on this month?
August already and quite a lot has been going on so far.

I got a call up.
Only just a month after submitting my aus citizenship application, I surprisingly got notified of my interview and potential test! Was way sooner than I had expected so got stuck in and did some prep for the test. Didn't really know what to expect from the interview but duly turned up in the city at the appointed time. The interview was pretty much me just confirming my name, dateof birth, email and phone details, and then a photgrpah was taken for the file. Interview concluded with being handed a ticket to take to the next station where I traded it for an ipad. You have 45 mins to sit the 20 question test, must get 75% to pass including all 5 of the " values" questions correct. Completed the test and hit the submit button - with 41 minutes to spare. Yes I passed with 100%..... not the most difficult exam I have sat. Now we wait until they do any final checking that they need to do and see if I get invited to a citizenship ceremony. Will keep you posted of course .   

Sad news.
This month I was saddened by the news that one of our Parkinson's  boxers had suddenly passed away. Carolyn was a very cheery soul always with a smile on her face and happened to be diagnosed in a similar timeframe to me. She was just 64 and had a sudden hospitalisation and unfortunately passed away.

There was a big turnout at her funeral of many Parkinson's related activities she was involved with including boxing dance craft group singing and other activities. The chapel was packed and was literally standing room only showing how well she was regarded.

It made me consider what the outcome will be for me hopefully many years away but thinking about what sort of a funeral would be there for me and how bigger crowd would I draw? Hopefully there would be a few people there to send me off and some kind words spoken but maybe not. I was thinking about the slideshow which is common at funerals and what images would be portrayed on my passing – what would people think was appropriate to represent a small slice of time that is my life. I don't wish to be morbid at all but would be curious to know how people see images of me and what would be summed up by the slideshow. I guess I'll never know and maybe just as well.

Friends.
Sometimes a person crosses paths with you for no particular reason.
It  may be just a fleeting moment in time or perhaps it is longer. 
It can be a single meeting,  a single conversation or maybe more.
It can be  a connection that is over as soon as it began or can develop in to a long lasting friendship.
I am lucky to have a friend that for some unknown reason crossed my path in such a way. 
I am reminded each day of how lucky I am to know this person, to have crossed paths and more importantly to call this person a friend.
Each beautiful morning when I see the sunrise, I remember and I am grateful.
But I am scared. Scared that one day that I may not remember this friend as my Parkinson's has a high chance of developing dementia.
So, my friend - I promise to remember you for as long as I can. Just know that if I dont remember you, that I did once. 

PD and depression.
Many folk who have Parkinson's suffer from depression, anxiety,apathy and other non-motor symptoms. Fortunately I count myself lucky that I don't generally have any of those sorts of symptoms but I did find myself recently having a moment where I was not my usual happy self. It only lasted a short period of time but made me realise I need to still keep an eye on my mental health over time as it may deteriorate or some of these other symptoms may show themselves from time to time. Hopefully not too soon and hopefully not too much to deal with.

 

PD and Dementia Research.
PD CogniCare has begun. I have come to understand the the wheels move slowly in Uni research. So "Watch this space" becomes Watch this space periodically.      

More help with Parkinson's awareness and advocacy.
YOPD catch up this month was an interesting one. For the first time we had a participant who was not exactly positive and commented a couple of times and appropriately.
This was the first time that I had really had to moderate the discussion of the young onset Parkinson's group. This particular individual was self diagnosed and self-medicating even though he had been told by more than one professional neurologist that he didn't have Parkinson's and instead had another condition FND. He was quite disrespectful of the professional opinions that he was given on more than one occasion so we will be addressing this at the beginning of the next meeting to hopefully get the general group discussion back on track and positive rather than negative.
 

Walking.
On going through rain, and shine. Still haven't missed a day. #committed. 

Medication/ Health.
Changes to my medication regime seemed to be fine so I will continue taking the bulk of my medication in the morning. It certainly is very convenient to get that out of the way before breakfast and the trip to the city.

The B1 seems to be having a positive impact although it is hard to measure exactly. I am definitely feeling less fatigued at the end of the day and did notice some improvement in my speech volume and sense of smell although this is very hard to gauge. I was able to catch a sense of aroma from a rose at a distance rather than really up close which was a little bit of a surprise at the time. Maybe I was just imagining it but will monitor and see how it goes over the long-term but definitely feel less fatigued at the end of the day. 

I happened to go to a Parkinson's Disease seminar locally which included a presentation by a speech pathologist. Some of the symptoms described were definitely things that I have noticed in my own speech and voice and as I listened to the presentation I decided it would be worth following up. I booked an initial session for an assessment and had that this week. As expected, actual db measurements proved my volume was more at the poor end of the scale so we immediately started on lessons so that I can work on this over time. It definitley feels like I am having to shout compared to my regular speech but I will just have to get on with it and practice. At least I can do that at the office first thing when no one is around to hear me. I downloaded an app on the phone to measure decibels while i practice. My usual range at assessment was 45-65 when it needs to be in the high 70s and above. At least i have a benchmark now. The side issues resulting from Parkinson's affecting speech is that there are correpponding potential issues with swallowing and choking can be a risk down the track, which is why I need to get on top of this. As well as giving me more chance to be heard in general conversation and more "distance" or length of speech in  training and meeting situations. I have taken a couple of short videos so that I can compare over time how this is progressing.   

Pilates.
Pilates is still on Wednesday evenings with a friendly bunch of regulars. We have some interesting conversations about a wide range of topics which makes it fun while doing the various activities.  

PFU Boxing and more.
Each week there is something new for the warmup. Good to see some of the old regulars reappearing too. Might talk to the group about gettting some video for the website to help demonstrate to potential new memeber to the group what they can expect.

Social Outings.
Lots on the calendar, regular "Thirst-day" drinks with the lads are always good.  We have settled on a new regular spot - we found that the Fourth Monkey has a nice fire pit out the back, and they do a good waffle fries to share while we chat over a beer.

Work.
Head down and focus on delivery with more work coming on stream from sometimes unexpected places. Still trying to catch up and complete some existing projects. Many new projects in the pipeline and continuing to clean up existing projects. 

Land Sailing.
The track update is not great news - now the home track will be based at Woodgate near Bundaberg. 

Otherwise for me its still so far so good.
Same Same. 

And that is all for just now - keep a lookout for the next post and thanks for tagging along!