You may have seen the sudden publicity of 4 new gene markers discovered for MND/ALS on Wednesday, all from ProjectMinE that I have spoken a lot about in my blog over the last 10 months. I am making some comments in a research update that I am currently writing, but now delayed because of this good news! However, I will say a few words here in my weekly blog.
In short, what this discovery means is that the Icebucket challenge, which raised in the UK £7M, really has enabled a move forwards with searching for a therapy for MND. In this post I will just leave you with a few thoughts and then get on with my usual weekly update.
- Donations are critical to attack this disease. It is not incurable, just severely lacking in funds.
- The 4 new genes (yes 4!) are the first result of a significant amount of the £7M raised in the UK being pledged to research.
- £7M compared to the investment in other comparative serious disease is a drop in the Ocean. Why is this? I believe it is simply awareness. So keep raising awareness guys!
- Unlike many diseases, there is NOT ONE SINGLE lifestyle change that can prevent MND (duh – Keeping healthy and fit did me no good)
- A constant Ice bucket raised amount is needed every year.
Ok on with this week’s post.
Also in the news this week, Amazon and the U.K. Government have announced a joint venture for the investigation of drone delivery of parcels. It is unlikely to be available for several years, and being one that is always at the fore-front of technology, I’d thought I would try Bragg’s Airborne Delivery Services (BADS) (beta) that is already available in my area. A new safety helmet for my trike was needed and I wanted it now! BADS promised me a 20 minute delivery, all I had to do was put a target in the garden.
Apart from a slightly poor aim by old Smudger Bragg, the pilot, and a small bump to my head the parcel with the helmet arrived within the hour! Excellent service!
“Smudger to base. Tiny mishap with delivery to Millard. Note to technical boys, cable release a bit sticky. Needs a bit of oiling”
“Thanks Smudger, return to base – Coffee and Muffins awaiting before your next delivery of 6 crystal wine glasses”
By the way readers, if ever the phrase “beta” is used, like Tesla, the electric car manufacturer, used recently for their driverless car software, remember it typically means “doesn’t work”! It is software engineer speak for “I have assembled this from sticky back plastic and staples!”
On the subject of shopping, I was hoping that as I can’t carry much these days, being 100% focused on just the walking, Jean’s shopping expenses would reduce. But no, awfully nice people in stores keep saying things like
“Do you want me to carry these packages to your car?”
They are just just too nice!
“Why is your husband giving me that funny look?” – “Oh, that’s just his MND, ignore him and put the credit card through!”
This week I am publishing the first in an occasional series of items I am calling WTFWTTO (What the **** were they thinking of).
This week, the Classic Latte cup and saucer. A Latte cup is top-heavy, tall container with a tiny base perched on an unstable disc that is meant to be carried through canteens safely. Just to add to the stupid design a low misshapened handle is attached to make drinking it even more dangerous. I had one this week in a pub whilst meeting friends. If I get one in a coffee bar, I always have it in a takeaway cup, it’s just too risky. Just one thing is missing from this ridiculous design, and that is a greasy base to ensure knocking over! I am taking nominations for WTFWTTO if you wish to take part.
What else has happened this week? Jean and I took some rubbish to the tip, including a large amount of cardboard from the endless Amazon deliveries we seem to have. It was busy, and I do feel a bit of a prune, limping out of the car, attempting to help Jean put the stuff in the giant bins. In reality I am just moving them from the car to the road beside the car, but I think it helps! Anyway, imagine me trying to sling some rubbish into a bin? More than likely I would follow it! “Jean, Jean, I am here, just next to the discarded garden waste. Sorry, now under the typewriter, thanks mate, didn’t you see me?!”
We safely left the tip, but not before a man scowled at Jean for wishing to vacate her slot before he entered the neighbouring parking spot. Jean gave her usual diplomatic teacher “smile” as we pulled out. I know that smile conceals the feeling “cheer up you miserable ***.” I just smile and wave as well.
On Monday I visited my friend in the Village, who was recently diagnosed with MND to help him start his voice banking. He had seen my guide and video. He got stuck at one point, but this was soon overcome, and is now moving ahead. He can get a real good voice as his speech is not yet affected. On the subject of voice banking I also received an email from Dr David Turner, who has also used my guide and video. David has produced a nice film along with a speech expert, and has used my video at a conference. Fame at last! Thanks David. It was great to know that my materials have helped you.
I have taken to riding my trike to visit people in the village. It’s just easier than staggering. I typically phone ahead and ask for gates to be left open, for quick access. Coming through!
On the matter of disease progress, my voice is the big pain, but it still works. I have to be careful eating certain things, like spicy nuts, as spasms make me cough and potentially choke. I find being calm is the only way to handle such events, and a bit of water sorts it out. I am not going to let disease affect my favourite snacks etc until I really can’t manage! Bring on those super madras nuts! Mind you, if the blog is late next week, please phone 999.
Finally this week. I just noticed that Dora, our dark Shih Tzu, has a “rear” like the legendary Tina Turner when she walks.
“I’m simply the best! Better than all the rest!”
Having recently been given the diagnosis of Mnd/Als I came across your blog via mnda forum many thanks for keeping it as light hearted as you do without detract ing from the importance of the condition I like you am so pleased at the positive research news. Please keep it up ,, you keep me smiling through your blogs . Well done . Algi
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