This blog is important to me and so I need to check it’s vital signs regularly. If it is coming down with something then I need to nip it in the bud. The last thing I want is people saying ‘nasty rash, not sure I want to go near that again’.
So I am now going to step outside ‘The World of Blog’ to check that it is still doing what it says on the tin.
For fear of repeating myself (I am), my initial reasons for writing the blog were :
- To raise awareness about early onset Parkinson’s
- To let others living with Parkinson’s know they are not alone dealing with seemingly random symptoms. It can be very isolating.
- To keep a journal, as I believe it will help me (and as soon as it doesn’t I will stop).
The readers fall into two categories those with Parkinson’s and those without Parkinson’s Actually, I suppose it is really three groups, as those in the intersection in this very odd Venn Diagram would be people with random symptoms awaiting an appointment. (Please consult a medical professional, these symptoms don’t necessarily mean PD).
So, I will do a health check on each of those bullet points from my first introductory post.
To raise awareness : probably more for people without PD (those with PD will be aware enough already) :
- People are definitely looking at the blog and clicking on posts. I have checked my viewing stats (yes, there is such a thing). I can see numbers, but not details of who has viewed.
- However, I don’t have a ‘satisfaction meter’ so I don’t know if people are enjoying the posts, I just know they’ve clicked on the link. Maybe they were looking for a purple handbag (or is that just me).
- However, as lots of people have subscribed, I am assuming people are subscribing because they enjoy reading it.
- As people are reading then by default they are becoming aware of PD. Unless they missed me explaining the abbreviation of Parkinson’s Disease to PD and think they are reading about The Penguin Diet (obviously this involves eating chocolate bars not p…).
I haven’t included comments on my blog as I am not a medical professional (did I mention that), and if anyone is concerned, confused or has any questions, then I am not the person to ask. I can’t stress enough that this is a personal blog.
To let those living with PD know that they are not alone :
- To talk about random symptoms. I may write some things which maybe I am the only one they happen to. To be honest as PD is bespoke that wouldn’t surprise me. Even mentioning symptoms to medical professionals they sometimes say ‘I haven’t heard that before, but ….’.
- For example this is an ordinary everyday activity. It may be something that some people with PD have a problem with, so they will think ‘not just me then …’ It may seem trivial but it is important. Pre PD I washed my hair everyday. Now I wash it once (maybe twice) a week. I could say I am saving the planet. However, it is just so much effort (not laziness), stiff arms and dexterity problems. So I should maybe wash my hair at 11.30am when my meds are working. However, I’d rather be out living my life, rather than saying ‘I’m washing my hair’.
Sharing tips and coping strategies :
- A couple of examples already written about, more to come.
To keep a journal and to help me :
- I am (selfishly) writing primarily for myself.
- When I post a blog I often feel like my eyeballs have been polished (that’s a good thing). So positive, bright eyed and bushy tailed … a boost of positivity and dopamine.
- It is making me think about positives in rubbish situations when PD disrupts my day.
- I wanted something constructive to do sitting down when my walking stops. The problem is often my typing and writing* goes as well. So the typing I get when my left hand stops communicating with my brain needs a lot of correcting. I tried dictation software, however my voice tends to go to a whisper when my meds are ‘off’, so the microphone doesn’t pick up my words very well (maybe I should do a blog written with dictation software without corrections, that would be amusing, but possibly illegible).
*My writing gets smaller (through difficulty with dexterity), and my voice often gets quieter (honestly I don’t know why but that is another symptom), when PD raises it’s head.
Could it GET any worse (I won’t be googling that one).
Before I started the blog, I had been looking for something creative to exercise my brain for a while. The only person, so far, who has gained from this has been Messrs H Craft. I have tried the following :
- Knitting (a square scarf).
- Mosaic (my nephew had a (rather good) mosaic portrait for his 18th – really).
- Card making (probably not a market for rubbish cards – or is there?!).
- Creative laminating (confidential for health and safety reasons).
- Painting (not skirting boards).
Negatives :
- Spending too long on the computer obsessively amending/rewriting (that damn medication)*
- I often get inspiration first thing in the morning, mind racing with ideas. But fingers and feet not working … aaaah.
- I am now reining back a bit. As always I am boom or bust. I have gone at this blog full pelt and am now slowing down to once a week.
- I am in danger of just being able to write ‘I sat and wrote my blog’, so must set myself a time/blog limit each day.
*Serious bit : The meds have lots of possible side effects. This particular example refers to the very serious (and unfunny) obsessive/compulsive side effects which may effect a small proportion of people who take certain meds. (please consult a medical professional if concerned or confused). As with PD symptoms, side effects are bespoke as well.
I have some friends who are editors in chief who proof read before I post (check I haven’t written ‘bum’ halfway through a paragraph), and make sure it is readable.
I am enjoying writing the blog and finding creative ways of making the subject readable. (bum). However, I hope I run out of things to type about, either I am cured, my symptoms stabilise, or the meds work effectively to manage the symptoms continuously. If people stop reading, but it still helps me, then it is worth doing – so if continuous photos of my food help me then that may well happen.
PS Thank you for pointing out the spelling mistakes. I like to think that makes the blog human (even that’s a positive spin).
PPS The blog is true, but anonymous – no photos or real names. I want people to become aware about PD (Parkinson’s Disease, not the Penguin Diet). I don’t want people to become aware that I am (probably not) getting my five, or (now) ten a day, or that I went to the cinema on Tuesday (I didn’t).
PPSS I am now digressing a lot, and actually this is the most personal piece of information to date. I have been toying with writing a novel for a while, and I have had a character in my life for a while. I have been saving her for best.
My nom de plume is Janet Bric a Brac (you may be able to sense my children sighing and raising their eyebrows).
There the secret is out – maybe she needs her own blog?
