Addendum to the last post about tablets/packaging stylists. If I understand it correctly (and apologies if this is incorrect), when a medication is produced by a company generically, it has to look different from the originally patented tablet. Also, blister packs, I believe are designed to take into account the moisture levels and shelf life of the medication – ho hum.
I have now asked my pharmacy/GP to prescribe the same brand of medication each month. However, to add to the confusion, I have just noticed that two of my very different looking tablets are actually made by the same pharmaceutical company with the same active ingredient. They must have changed the tablet design/packaging and so I am now even more confused. This too confirms how difficult the packaging is to decipher.
Not so small print : Symptoms differ, and ways of dealing with them differ. If you try any of these techniques please exercise caution, especially walking backwards, please only do this if someone else is with you – thanking you, end of Health and Safety announcement.
Now on with the blog :
Goodness me, that was like a cinema trip where you have been watching for 15 minutes and the opening credits suddenly start to roll. You turn to your friend and say ‘crickey the film hasn’t even started yet’.
I often feel that it is me versus PD. I won’t call it a battle, because that has negative connotations. It’s not a game of chess either, it’s not that civilised. It’s probably a game show with different rounds. Some of them a bit funny, some a bit odd, some scary, some upsetting and some debilitating.
I will call the game show ‘Cheeky Challenge’. I say ‘cheeky’ with a touch of irony. In the way that someone could be called a ‘cheeky chappy’ and you feel like punching them.
For those who have been inadvertently part of the show already, thank you for the encouragement and patience (whilst I alternate between laughing and crying). Also, thank you for not abandoning me on a street corner. I do hope the show doesn’t catch on and go to a series.
It is one of those game show concepts which is deceptively simple. Just two choices at the moment of the way my walking challenges me.
- My left leg stops automatically bending and swinging forward.
- My left foot goes into ‘spasm’, like a twisting cramp which doesn’t hurt. You can actually see it contort and twist.
Sometimes my walking stops suddenly, like flicking a switch. Sometimes I get a warning as I feel my foot start to twist.
Three ways I can sometimes get out of it are :
- Technique change
- Phone a friend (yes, really)
The challenges so far have included (all absolutely true examples) :
- Leicester Square Challenge:
- Key problems : Busy environment, noise, people crossing my path, traffic and lights.
- Technique change : Walking backwards with a ‘sweeper’ friend behind clearing the way and a person either side guiding me.
- Explanation : I often find I can power walk backwards but can’t get going forwards.
- Forest Challenge :
- Key problems : Uneven ground, trees in the way, slight panic of being stranded.
- Phone a friend : Phoned a friend on my mobile and just started talking to her. The distraction somehow unlocked my foot and enabled me to walk out of the forest.
- Explanation : The key to this is that my friend didn’t know why I was calling, it wouldn’t have helped if I had talked about my walking problem, it had to be a total distraction.
- London Theatre Trip Challenge :
- Key problems : Busy environment, too many people to walk backwards through and not enough friends with me to guide me backwards.
- Technique change : Ran and weaved through the crowds, literally sprinted (with my poor friend struggling to keep track of me).
- Explanation : I can often run, but can’t walk.
- Doorbell/Phone Challenge :
- Key problems : Trying to negotiate doorways and general family paraphernalia (good word) to answer the phone or door before the person gives up and goes away.
- Technique change : Pretend to kick a football. So forcing my leg forward as if I’m about to kick, thus walking quite oddly.
- Lone Dog Challenge :
- Key problem : On my own dog walking, foot starts to go. Have a deadline to get back in half an hour, but dog must have a walk.
- Technique change : I took on the attitude of a person wearing bovver boots, going to do some bovver. Change of mindset and attitude somehow makes my leg assertively swing forward.
Along with the above techniques, others I have tried to get walking, include :
- Light pen, which puts a line on the floor just in front of me, I step over the line
- Chocolate (to boost dopamine)
- Music and headphones
- Big walking movements
- Step backwards, to then step forward
- Think marching 1,2,3 in my head
- Concentrate on heel toe walking
- Stepping over an object on the floor
Also, randomly, even when I can’t walk properly on the flat ground and really struggle, I can do stairs. Somehow (don’t ask me, ask my brain) the combination of eye/brain/leg works when walking upstairs.
Finally, for the moment, which will confirm your thoughts that I am going completely mad. The other day I tried the following:
- I drew a line on my (old) glasses (with a wipe off pen). This was my random idea that if a line on the floor, or stepping over an object helped me walk, then a line on my glasses would be permanently in my eye line and would enable me to step forward. I don’t think it will be going into production anytime soon. Although all breakthroughs probably start with a mad experiment.
Life may be twaddley but it is not dull.
Stop press : Two muddy ladies, with a whiff of glamour, spotted with two muddy dogs, with a whiff of bonio, attempting to cross the road. Taller, muddier lady is staggering and keeps falling off of the kerb. The other is talking to her using all her patience and persuasion skills. After about ten minutes of general faffing, the patient lady, ties the dogs by their leads to the road sign and turns and offers the taller lady a piggy back. Suddenly the taller lady runs, runs for the hills (well her house over the road), like she has never run before. The patient lady shouting after her ‘keep on running’.
(If that was too cryptic, I am the taller lady, and I stopped walking about fifty metres from my house. The ‘threat’ of a piggy back from my friend suddenly reconnected my brain and legs to run!)
PS : The above scenarios have all happened. The problem is even with all these options, sometimes none of them work, and I just have to wait for the connections to start working again (either through meds or just because they decide to randomly). Also, often in the heat of the moment I am flustered and can’t remember any of them. So feel free to shout ‘walk backwards’ to me if you see me struggling.
PPS : I may appear to make light of this, but I am sitting in a warm house typing, with a drink of hot chocolate. Believe me in the moment it is incredibly stressful and debilitating. And actually this is about awareness (did I mention that already) and I am not sure anyone would read it if I didn’t dress it up with a bit of creativity.
PPSS : There is a bit of a competition theme going on here. Chinese Whispers, and now a Game Show. I look forward to Buckeroo with interest.