My journey with Parkinson's
by Sue Waight
I have had a blog called 'Parkies and me - my journey with Parkinson's' for the past four years. Now that I have finished work and have more time, I wanted to add a Podcast to provide more information and interest for my followers. I also hope to get guests on my Podcast on specialist subjects that would be useful to know for both carers and those they support. Look out for interviews regarding important legal decisions that is well worth a look. If you are interested in my Blog, you can find it on www.parkiesandme.com as it follows my journey from diagnosis through my first four years .
Episodes
-
It's been a funny old week
A change in my presentation and my reaction to it. After being stable for so long, needing an increase in medication has made me stop and take stock about how I feell
-
Oh how the times have changed
How did I get from the girl who loved to party, to the woman who likes to sit on the couch and watch telly with her man? Lots of changes in between...
-
Getting organised and hopefully staying that way!
With a compromised brain that doesn't always remember things so well, it is important to have systems in place. Here are a couple of little things that help me.
-
How low can you go?
It can be challenging sometimes when out in society and needing to rest. Often seating is too low to allow ease of use - creating difficulty in getting up - or with arms that make chairs impossible for larger people to use.
-
Being Pollyanna - or hiding behind a smile
Often it is the people who seem the most 'together' all happy and smiling and joking who can be the ones that need our help.
-
Hidden symptoms
Sometimes it is the hidden symptoms of Parkinson's that can be the most difficult for someone with this condition. If a symptom can't be seen, sometimes it goes unacknowledged and therefore the person with the condition does not get the support they need.
-
A bit emotional
This blog is the place where I send all my thoughts and feelings about a life lived with Parkinson's. How do you deal with yours?
-
I'm not deaf, just overloaded
Sometimes when we don't respond immediately, people may think we didn't hear them. But, it may be so much more complicated than that!
-
Some thoughts about exercise
We all probably know that exercise is important for those of us with Parkinson's. However, an awareness of the type of exercise that will work for us as individuals is also important.
-
A bit emotional
I don't know if it's my age or my Parkinson's but I do get a bit more emotional about things than I used to.
-
When did I get old?
I look in the mirror and my grey hair is testament to the fact that I am in my twilight years. But, often I don't feel old, despite all the creaky joints and aches and pains that come with the territory. Life can still be a good life, if we can focus on the good within all our lives. I hope you…
more -
Returning to Normal - wishing the impossible
Normal. What does it even mean? What is normal for others may not be normal for you and what is normal for you today, may be quite different to yesterday or tomorrow. It is an ever changing state of being and not static. Therefore, it is difficult to define.
-
We're a little bit different but it works
How we live as a couple may be different from others. We learned early on in our relationship that we both valued and needed to have our own space and independent activities. It works for us and will help us in the future if not all activities are shared.
-
The importance of peer support
In many parts of my life I have been involved in groups and really feel that a peer support group is the best thing you could have available to you when you, or someone you care for is diagnosed.
-
Forgetting and Fumbling about
I've notice my memory getting worse and especially when I feel someone is pressuring me and I become overwhelmed. So, things I should be able to do, even if quite familiar, can be difficult when feeling over stressed.
-
Reimagining my present and future
II recently read an interesting viewpoint from someone in the Facebook page I am a member of, about a different perspective in dealing with their Parkinson's. Rather than looking negatively on what we can no longer do, focussing on the here and now and building on what we can still do and more....
-
I'm a "muller" if there is such a thing
I am a muller. I like to think things through thoroughly before taking action I also enjoy gifting things to people and sharing in their joy.
-
The joy of gifting
I have chosen to give my daughter and my grand-daughters some trinkets from my jewellery box. I wanted to see the delight when they chose something that they liked and anticipated seeing them wear them. Better this way for me rather than them having a jewelry box put in front of them on my passing.
-
Mulling and trying to work things out
I admit to being a bit of a "muller" if there is such a thing. I tend to ruminate over things and at times I need to check in with myself what I am prepared to share or not. Also, if not willing to share perhaps "Why not?" would also be a good question.
-
This week, next week, sometime, never
My husband and my daughter have had the misfortune to be a victim of my lack of ability to define what is 'this Saturday' or whether it is 'next Saturday' and it has caused a lot of confusion over the years. Maybe that was a pre-parkies thing? A warning?
-
What is normal?
Normal is a word that is bandied around a lot. But, what is normal? To me there is really no such thing, because we are each individuals and even our own 'normal' changes over time.
-
A letter to my newly diagnosed self
Things I wish someone had told me when I was first diagnosed.
-
Sharing recipes for life
I love sharing recipes with friends and family, knowing they are good because we have tasted them and we want to have that recipe so we can make it and share with others too. So too, with Parkinson's sharing our recipe of how we manage this life with Parkinson's and knowing it works for others...
-
Life is like a game of bowls. You never know what you are going to get.
The game of bowls is a good comparison to a life with Parkinson's we all have our own way of doing things and sometimes they work and sometimes they don't!
-
Learning my limits - Where am I at? What can I do?
My UK trip has taught me that what I might wish to do and what I am able to do, may have to come to a bit of a compromise. It's better to have some experiences than push ourselves beyond the level we are at and have to miss out completely as a consequence.
-
Travelling with Parkinson's - Embrace, adapt and enjoy life
Don't wait too long to travel and tick off your bucket list. While some may discourage with some compromises and adaptations travel can still be possible and enjoyed.
-
Some lessons I have learned about listening to my body
Just a few thoughts about listening to my body, especially when travelling.
-
Banking, they are being such "$%#kers!"
The loss of bank branches and the risks this entails for vulnerable people.
-
The challenges of travelling - self evaluation
Nearly five years in and we are currently on holiday in the UK. This episode is part of a travelogue that I like to do when I travel to the UK and other places and the challenges I am faced with and strategies I use.
-
The Big UK Trip
This is a rather gravelly voiced me first thing in the morning, with my first recording of our eight week trip away to the UK. First time using my little travelling mic, so all in all some little adjustments so I am not out of touch for such a long time.
-
Feeling vulnerable
I had a crash in my car today, but luckily I was the only one with injuries and they were minor. It left me feeling vulnerable to judgements based on my age.
-
World Parkinson's Day
Today is World Parkinson's Day. I won't say "Happy World Parkinson's Day" but I acknowledge the place that it has in my life. In the shadows, in the background and definitely not centre stage.
-
Repurposing and finding purpose
A diagnosis such as Parkinson's is bound to affect how you think and what you do. For me, it has created many positives.
-
Famous people with Parkinson's - A legend in your own lunchtime
What will you be remembered for|? What would you like to be remembered for?
-
Oh knickers!
A bit of a theme going on... this was actually the first poem I wrote.
-
In the knickers of time - a poem absolutely not about Parkinson's
I wrote this silly poem after finding myself in rather a tricky position at bowls recently. It is me laughing at myself, which happens quite frequently. It has nothing at all to do with Parkinson's, but we all need to step away from it sometimes don't we! I hope you like it.
-
Access issues for disabilities
Sometimes it seems the planners and builders of today's homes just pay lip service to the issue of accessibility. The access can be limited and not as well thought out as they could be.
-
Living with uncertainty
I'd like to acknowledge Donna Parkhurst a fellow person with Parkinson's who I follow. She was talking about this topic and it made a lot of sense to me. We all live with uncertainty in life and it is hard not to go into the "What if's" but I try to avoid it as much as possible.
-
What is a friend?
It's easy to be with a friend when things are going well, it's when you hit the rough spots, the potholes in life that is Parkinson's that you know who is someone you can count on. What is a friend to you?
-
The embarrassing stuff
Continence is not something you would discuss over coffee, but it is an important thing to talk about as a symptom of Parkinson's.
-
Things are going really swimmingly
Swimming three times a week now and just some thoughts about swimming and Parkinson's.
-
Impulsiveness and Internet shopping - a confession
One of the side-effects for some of the Parkinson's medication is lack of - or reduction in impulse control. I see that in myself with internet shopping and am trying to be more aware.
-
It is better to know - Getting a diagnosis or not?
As someone who has a number of comorbidities, I hav always found having certainty about what each health issue is, has always been helpful. Even if there is no cure, we can seek advice and support better when we know what we are faced with.
-
Generational shifts - Parent to Child - Child to Parent
For those of us who have parented, life goes through many changes. As we age and our hair turns to grey, it often seems that we are the ones one the receiving end of our childrens' ideas of what we should or shouldn't do. How do we go from being the parent to our child/ren seemingly trying to...
-
So you've got Parkinson's - some thoughts and a poem
So you've got Parkinson's. Does that mean that everything else in your life must take a back seat and let this beast of a condition take over? No way, I say! Parkinson's is like the freebee you get with something you wanted to buy. You take it, cos maybe you feel you ought to, but you probably…
more -
A Health Passport and other information
A Health Passport can be a useful document to have when you have complex health issues. It is a way to record a person's needs and wishes for a time when they may not be able to speak for themselves. I recommend this and that it be done early so that it is available for whenever it may be needed.
-
Do I want to know, or do I not?
I'm not one for crystal ball gazing. For trying to guess what will happen in the future. I choose to focus on the here and now. But, with all the information that is directed to me relating to Parkinson's it is hard to ignore. But, I can choose what I look at and when.
-
There's a fine line!
Sometimes it can be hard to gauge if what I am doing is too much or not enough. I am trying to increase my exercise tolerance, but yesterday my body told me I had overdone it! As I always keep saying "I need to listen to my body" and yesterday I did!
-
Tough times and tough decisions
With a condition like Parkinson's there will be some tough decisions to make along the way. When is a good time to have those discussions? Or is there even a 'good time' to discuss at all. Here's my thoughts...
-
Things are going swimmingly?!!?
Who knew relearning how to swim would be such a challenge?
About this show
I have had a blog called 'Parkies and me - my journey with Parkinson's' for the past four years. Now that I have finished work and have more time, I wanted to add a Podcast to provide more information and interest for my followers. I also hope to get guests on my Podcast on specialist subjects that would be useful to know for both carers and those they support. Look out for interviews regarding important legal decisions that is well worth a look. If you are interested in my Blog, you can find it on www.parkiesandme.com as it follows my journey from diagnosis through my first four years .
Hosted by
Sue Waight