A progressive disease is one that gets worse
A progressive disease is one that gets worse. Perfectly true but for an awful lot of them it’s in an unpredictable way. Will it progress quickly or slowly? Is it predictable? What are the consequences?
Inevitably this leads to a lot of anxiety, sometimes even depression and worry. Doesn’t this sound like multiple sclerosis?
I have had SPMS for over 45 years There is no cure or medical treatment. There are people much younger than me and they are much more seriously affected by MS. Maybe I should be grateful that it has all been so slow. Even so it’s the “not knowing what’s next” that worries me.
A couple of years ago
I was doing the dreaded 9-Hole Peg Test when I first noticed numbness in my fingertips, I really struggled to pick up the nine pegs individually and not drop any onto the floor.
‘Oh bugger’’ I thought. “I am now losing the ability to just pick something up that is small and fiddly”. I put the problem to the back of my mind
The next day I was struggling to tighten up is screw using a screwdriver. I kept on trying to get the screwdriver to engage with the head of the screw. Eventually I gave up. My next-door neighbour saw me struggling. He just picked up the screwdriver and put the screw into the hole and tightened it up. It was so easy and simple for him, so frustrating for me
A progressive disease is one that gets worse
In the last couple of years my manual dexterity has become a bigger and bigger issue. Now it is there in my face all the time. Suddenly simple tasks are much more complicated, so frustrating. Doing activities that were easy-peasy are suddenly fiddly, tricky and even impossible. Here are a few examples.
- Twirling spaghetti round a fork requires a lot of concentration.
- Using chopsticks is an art form that I have consigned to the bin.
- Doing up the buttons of a shirt is a challenge.
- Writing a shopping list, it is now an illegible scrawl.
Manual dexterity exercises
Now I am interested in maintaining my manual dexterity for a huge number of reasons. I took a look at Google. First up, there is no simple solution to this problem. There is no wonder pill, what a surprise!
Instead it’s all down to hard yardage or should I say practice, practice and even more practice. So now while watching television I will be doing exercises with my fingers. Some simple exercises on this website. Now I must pretend I am playing scales on the piano or giving the stress ball a bit of a workout. Incidentally my stress ball is shaped like a brain.
Yea, MS is progressive, just wish I could predict where it will strike next plus its unlikely that I will get back what I have lost. I have just got to make sure that I keep using what is left for as long as possible.
The phrase ‘Use it or lose it’ springs to mind. Maybe ‘Use it and keep it for longer’ would be more appropriate
I cannot do things I once took for granted
Prevention is better than cure.
Quite right but how do you prevent getting MS in the first place, the 64 million dollar question
I am, in the words of the Leonard Cohen song, “waiting at the station just down the line”except that my stress ball is shaped like an avocado!
You are clearly listening to advice much more than I ever did because you describe watching TV and doing exercises at the same time whereas I, stupidly, did nothing with my lame left hand.
I’m a believer in the mantra ‘Use it or Lose it’ or ‘Use it to Keep it’. I’m well aware that won’t help everyone but I believe it can help.
I don’t normally email my reply, I stupidly assumed they were automatically emailed.
All good Pat. At least I now I understand that you have not fact been ignoring me!
Given how similar our backgrounds are (England 50s birth, O and A-levels, science, education….) I think there may be much we can commune over….
I am learning about WordPress the hardway, call it trial and error
I also find the unpredictability frustrating.
I am a grateful that my MS started relatively late (so it did not effect my youth or my young family) and like you I keep busy and positive.
But of course the future is worrying and I find not being able to plan annoying. Big things (like should we have expensive adaptation work done on the house) … down to little things (like do I need to book a wheelchair seat or can I manage with my walker which would be so much easier!)
But at least the MS is not going to kill me.
As I still have a daughter who needs me for at least a few more years I consider myself very fortunate compared to a friend with a terminal diagnosis.
So yes lets be realistic about the future getting more difficult but lets try to stay positive and “keep what we can for as long as we can”.
BTW Well done for doing the exersizes.
Intellectually I know they have been proven to work and my 6 weeks residential rehab showed how much it helps me … but for some reason I just can’t get myself doing them often enough! So thanks for inspiring me to dig out my “brain” which was hidden in a drawer!
Good luck with PIP interview. Remember they are just ordinary people doing their job so they are there just to pay their bills … they have not turned up for work with the intention of torturing disabled people!
If you treat it as an opportunity to educate them about MS I know you are great at that and I am confiodent all will be fine.
State of mind id so important in order to live successfully with MS. ‘Use it or Lose it’ or ‘Use it to Keep it’ are both so important as well as keeping the brain active.
At the last minute my PIP assessment cancelled until 1st Aug. I understand what you are saying about people doing their job but whole system is totally unfair. Survival for disabled people is a case of finding solutions to the problems. DWP are only interested in the problem and if you have a work around you are then penalised. The assessors are not interested in being educated. they just want to process you or tick the boxes, like commuters on a train in rush hour.
I’m sorry about the rant. The whole PIP system is devoid of human contact unlike DLA