Exactly what state am I in?

And I don’t mean North Carolina! A fairly quiet week in onein400 land, but still enough challenges!

On Monday I had a serious decision to make. I had a hair appointment for 12.45pm, but the weather was terrible with high gusts of wind! What should I do? Risk being blown into unsuspecting pedestrians as I stumble from car to hairdressers, “Sorry, sorry, I didn’t mean to punch you in the face”, or risk looking like Shaggy from Scooby Doo? In the end I thought I’d wear a hat for a few days to save embarrassment.

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On the good news side this week, on Sunday I trialled the trike that I’ve been so excited about, and yes, it’s all go for getting one. What a beast! They are not cheap, and essential options make the price high. Fortunately, the 3 wheels come as standard in the price! That is correct, I hope? “Jean, we need to check something…”

One of the advantages, if you can call it that, of being disabled is that you can buy many products and services VAT (tax) free. The trike is not applicable, as it can be used by an able-bodied person as well! What a stupid rule. My wheelchair can be used by anyone, and yet that qualifies for VAT relief. This is plainly ridiculous as I cannot ride a normal bike, and I am buying one to help keep what remains of me fit! HMRC, if you are reading, come on, allow for a post purchase exemption, with proof of disability. Ooh, that’s nearly a political statement, so sorry readers.

One of risks of riding a recumbent bike is your invisibility to white van drivers. Each trike comes with a flag pole, at the end of which you can attach a mini flag. I think a nice warning flag in pretty rainbow friendship colours, and a polite message “Please keep your distance” would suffice. What do you think?

I was at the gym on Wednesday and I noted there are still January gymsters attending. These people are awful. They prance around for a month and then disappear. Hopefully, the busy time will calm down soon. In fact, there is a rather wicked person using MY bike at my gym. He, or she, is tightening the adjustments so tight, that I have to use all my might to release them. However, shouting out loud insults normally brings my strength to a suitable level to loosen. I then over tighten the bolt myself! Two can play at that game!!! I am thinking of taking some araldite glue next time to fix the seat at the appropriate level! Actually, the evil person is tall, because the seat is left at height of a Dutchman, and the handlebars low!

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SnackaPoo

What is this boring piece of garden? Well, this week I discovered that it is the area where Poppy and Dora store their snacks!

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No more to be said. I have named it SnackaPoo.

We are totally enthralled with the Netflix boxset, “House of Cards”. Actually, Jean and I make a good Claire and Francis Underwood. It’s sort of like the White House here, with all the important decisions being made by Jean, and I appear aggressive, threatening and just that little bit odd!

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I think we are a bit more romantic though. So a Valentine dinner for Sunday? Another phone call by a slurring Lee. What must they think, and why is there always a problem? It went like this

“Good evening, can I help you?”

“Goo evening, I would like to wook a table for my wife and I for Sunday night”

“Yes …. sir, what time?”

“About seven hurty”

“Yes we have space. I do need a pre-order for the main dish. The choice is Rack of lamb for two, Spinach gnocchi, or Hake”

“Oh. My wife will have the wish, but I don’t want the wish or nooki, and the lamb is for two only?”

“Yes, Sir”

“Well I am a bit stuffed then, can you not do the lamp for one?”

“I’ll put you on to my manager”

Scrambling around noises.

“Yes, Sir, you are speaking to the manager”

Sigh…. “I have booked for Sunday night but I am told…”

To save you the boredom, I repeated the same chat. One minute later, verbally exhausted.

“I am sure Chef can do”

For xxxx’s sake, that was hard wasn’t it?

Right, back to my post title, exactly how am I now? This brings me to the serious part of my blog (da da DAH!!!). How exactly do you measure MND disease progression? Blood test, scan, highly scientific measurements?

No, it’s a questionnaire! It is called the alsfrs-r rating. It is a score, max 48, if no symptoms and zero if complete paralysis. It is effectively a multi choice, 12 question paper. I won’t include it in this post, but if you are interested you can see it here online.

This is the rating used when testing drugs!! Wow, yes. It is quite subjective in places, false improvements can appear, you know, people try harder etc. So, when you read media reports, or more precisely certain laboratory claims of MND/ALS improvements with their drug, take a detailed read. By the way, I want a cure or therapy more than anyone, but we in the MND community are flooded with research trials/roads to recovery that are sprinkled with false hope. We need to follow a solid path and be able to see the wood for the trees.

This is why there is now a massive focus on true disease markers, blood tests, scans etc.

Where am I on the scale you ask?

I believe I am about 45 to 46. Or perhaps 44. There you have it, subjectivity! Typical rate loss per month is 1 point. Having been diagnosed for nearly 2 years, I am hoping this slow progress continues.

Finally, returning to one of my former subjects in an earlier blog. Songs and driving etc.

I heard “When I was Young” by Charles Aznavour on the radio the other day. Only comment…

If you really want to feel worse about your life, listen to it! Not a tear jerker, just a staggeringly depressing song. Jeesh!! What sort of person writes a song like this?

Ok, you still there?

Next week, a bit about my daily routine (yawn, you say….). I will try to make it interesting. And I am sure something crazy would have happened by then!’

 

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One Comment

  1. Dan Summers says:

    I was diagnosed with ALS three years ago and I have the same experience. My scores have increased. I would say I am about a 45 or 46. But that’s this month. I should also say hoping to maintain slow progress

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