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Nasa is not the only reputable authority on the existence of Xenomorph’s John, I’m sure there would be some readers of this column who could vouch for them. Unfortunately.

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You certainly do need to do your homework John. When I was in hospital being nuked, radiation therapy, a doctor arrogantly, without informing me let alone discussing it, changed my prescription from Mirabegron to Oxybutynin. I had been using this previously but found I couldn’t tolerate it so we had a verbal altercation in the 4 bed ward which was embarrassing for the doctor.

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Some people will do anything to get attention. You young people these days. I don’t know how you live with yourself John, disgraceful!

I am still able to walk, with the aid of a Hip Flexion Assist Device, although staggering around like a drunken orangutan, frightening people, would be a better description for it. I do fall over a couple of times per week on average but rarely hurt myself badly. One exception was when, at a wake for a mate of mine in the beer garden of a pub, I was making a wobbly landing approach to a chair and a young lady of questionable sobriety grabbed me to assist which resulted in me making a crash landing on the cobble stones and fracturing my elbow. There was a crowd of a couple of hundred people there and there is nothing like making a fool of yourself in front of a good sized audience, even if I can’t claim all the credit for the performance. As a result I am very wary of people grabbing hold of me to help stabilize me or help me up.

I am trialing wheel chairs at the moment so no crashes from that as yet. Watch this space.

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I’d be it it too John. It does sound like fun and if it also might be of some benefit why not?

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Thanks John. I keep pretty well up to date with it but a lot of people do seem to struggle. Have a good one.

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Sounds interesting Ed. Often medico’s will only recomend one of their favorites or they are not up with what treatments are available.

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It’s really unfortunate that so meny people feel they need to hide their MS. The more people who do speak up about it the more recogition it gets in the wider community and the more understanding is developed. Being thought to be drunk is not nice and causes problems. When i got a HFAD one of the bennefits of it was that people no longer assumed that I was either drunk or on drugs.

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It’s still a commendable enterprize John. Finding information about MS and its effects, treatments and consequences can be difficult for a lot of people.

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Same here John. I tried Modafinil but it does nothing for me. Have a good one.

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I have lived for 12 years wwwith PPMS, only because there are no DMT’s available for PPMS here in Australia, appart from Ocrevus which costs over $35,000/year here so it is out of reach. I also now have tonsular SCC, stage 4, and my last CT scan showed the metastatic tumors in my lungs have shrunk over the last 3 months. I am not on any treatment at the moment so the only explanation is an imune response. This could have been triggered by some Pulonary Embolisms (blood clots in the lungs) and/or by Covid vaccination or just by an over active immune system that’s causing the MS. We don’t know. This probably doesn’t help anyone much but it’s just an observation, all part of the mystery. Have a good one.

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G’day All,

Apparently Santa struggles a bit here in Australia because of the heat and his <span style=””>inappropriate</span> clothing. I’m sure these will be exacerbated by MS. The poor old bastard. There are, however, some good cooling vests available now though. I have found a way to add another convincing argument when dealing with sceptical children who are starting to doubt the veracity of the story. I have bagged up samples of genuine reindeer excrement (which coincidentally looks remarkably like that of large kangaroos) for friends etc. to place on their lawns for the children to find on Christmas Day as proof that Santa’s sleigh was parked there and, as the reindeer had obviously eaten some grass but then of course could not carry any excess baggage, they had to leave the deposit. Small children don’t see anything incongruous in this as dealing with excrement, under various guises and euphemisms, is a part of their daily business of life. Unfortunately I think it would now be too late for any mail orders to be delivered in time. Have a good one.

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G’day, I use a Hip Flexion Assist Device HFAD made by Becker Orthopedics. It is the best invention since canned beer. I did have to modify it because I have a lot of lower back pain but now it’s great. Also have a look at these for a scooter/wheel chair. They are made in New Zealand and are made to order so it takes about 6 months to get one so unfortunately I have missed out because I have run out of time. I also now have cancer. The sitting position and the fact that there is nothing in front of you combined with hands free operation mean they would be great for allowing you to keep doing things.     https://omeotechnology.com/

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G’day, I am in Australia so summer is coming and looking forward to 40+ degree Celcius temps, NOT. The best cooling vest I have found is

https://www.polarproducts.com/polarshop/pc/Adjustable-Cooling-Pack-Vests-c535.htm

Phase change ones, frozen cooling packs that melt while using, are the most effective and water ice is more effective than gells. Evaporative vests are least effective. You also need to be able to have spare freezer packs so one set can be refrozen while the other is in use.

As for expense, you can buy versions of these on Ebay for about $20. They are not very durable but if you are not working or very active they are effective. I started with one of these because they are cheap to try to see if they work for you. It lasted most of the summer and some of the gell packs, you fill them with water when you get them,  started leaking. Velcro tabs also came off. I was using it under the shoulder straps of my HFAD though in my workshop and around my block so it was subject to a bit of stress.

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G’day Alicia, There are very few examples of any technology that can’t be improved on, particularly when all the users have differing requirements. They haven’t made the perfect car yet….

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