Scratching head…

Posted on: Saturday, Jul 19, 2014

Colosseum 2This is weird. I know I posted the other day (about Laura’s trip and looking at the Paleo diet and MS) – and Jo had commented, but that disappeared as well… hmmm…

Anyway I think Laura is in the lovely walled city of Dubrovnik today – have loved following her adventure from Paris to the Swiss Alps, to Barcelona, to the French Riviera, to Verona, Venice, Pisa, Florence & Rome, to Athens, Mykonos & Meteroa…

Laura Greek FlagOn the health front, just had two days that were ‘out there’ to say the least – don’t know if it had anything to do with MS or side effect to medication but it was weird – sort of cross between allergy (itchy rash/swelling) and food poisoning (stomach pain/diarrhoea/vomiting) and ‘flu (loss of voice, muscle pain in arms & neck) plus a generous dollop of chest and lower/upper back pain.

Meteora 4Had nothing to eat or drink (including medication) for 42 hours (except water)) for 34 hours, followed by the first 8 hours of solid sleep I can remember. Woke at 7:00am (usually 5:00am), cooked a mushroom omelette and six hours on, still feeling fine. BTW, the mushroom omelette is part of the new Paleo thing – am easing into it, removing dairy and some processed foods like refined sugar and pasta. Only missing the morning cuppa so far and that could not have caused the above reaction!

PaleoAnd here’s the reason I know I posted – I included the pic right for the Paelo diet and it is still in the ‘library’… The Paleo diet is also called the Caveman diet because it is about eating only stuff that can be hunted and gathered (meat, fish, veg). Celebrity chef Pete Evans is promoting so has some credibility and that’s why I Googled – and what should pop up, but a huge rap from someone who had found it great for helping with MS and rheumatoid arthritis.

So, the other pics are Laura at the Colosseum, waving the flag on Mykonos and on a monastery wall in Meteroa. There are blog posts on Forever Free – http://www.foreverfree.com.au/news/

Forever Free

Posted on: Sunday, Jun 15, 2014

10314709_10204066186393013_8485314735277070984_n1Not much to report on the diary-health front – same ol’, same ol’ – which could be a good thing!

Been flat out again – while Rydges takes most of my week, we launched a new Small Guide Travel site (with lots of social media attached),Forever Free – www.ForeverFree.com.au. Laura is about to ‘research 20 countries in 40 days for us but, at the moment, she is just chillin’ in Michigan…

I did pose a question – June 15 is Father’s Day in the US – so is Father’s Day dictated by the geography of the father or the daughter? I mean, a wee present wouldn’t go astray… and look at that sun and warmth – very jealous, it’s open fire stuff here with a maximum temp of 13 degrees!

Dear Diary…

Posted on: Thursday, Jun 5, 2014

Baseball Game 1Baseball Game 2SquirrelGraduationGood Morning Diary – not much to report. One small irritation – when the bowel and bladder say it’s time to get up, the brain joins in and I am far too awake to return to sleep – lately this has been happening around 5:00am and it doesn’t start to get light until 6:00am. Wondering if a one-hour afternoon nap might move the night sleep an hour forward?

Anyway, two positives on this front – firstly, at least the brain is joining in – bowel and bladder movements before one wakes are not desirable and, at 5:30am, they have been repeating QI, which has been living up to its extended title, Quite Interesting.

I now know many things that had scurried away from my path of learning… for example, that a former Governor of New Mexico, Lew Wallace, signed the death warrant for Billy the Kid and also wrote that rather important historical novel, Ben Hur…

… Ohio University has proved that spiders prefer classical music to rap, which is somewhat surprising seeing they have eight legs and eight eyes – born to dance… and the huntsman, as well as not being able to make webs, is the only variety of spider that has lungs… the first thing to break the sound barrier was a whip… and the best floor to throw your cat from if you want o kill it is the seventh – higher than that and it has time to form a squirrel-type parachute thingy for a softer landing. Who said there wasn’t an upside to this silly disease?!

Oh! Helen from my neuro’s office phoned with the cost for the radical new infusion treatment not on PBS – there are five infusions over five days for the initial and three for the one 12 months later and each vial is available at the bargain price of $14,063 – that’s $112,504 in total. Might sit that one out for now.

And the photos – Laura went to her first basketball game in Michigan – barracking for the Tigers, she and Kayley are sharing a “Tiger’s Tail”. The penultimate one is a squirrel in Kayley’s backyard… after being thrown from the eighth storey… and the last one is Laura giving Kayley a lift home after her graduation.

I’m Back!!!

Posted on: Sunday, Jun 1, 2014

Laura San FranciscoLaura Times SquareLaura NYPDLaura Money 4 WeedI’m guessing that very few of the folk who used to follow my MS blog would have continued dropping in because I gave up posting quite some time back. February 11 in fact, I just noticed. If you have dropped in, I have been having a lovely time in ‘denial’ as much as possible and not giving MS too much attention. Recently, however, the needy little bastard that MS can be has been shouting, “Look at me!  Look at me!”

Following my neuro appointment yesterday I have decided to keep a bit of an MS ‘diary’ – I could scribble it in a book, but I thought I might as well do it here. I will try and keep it cheery but be warned there may be mention of bodily dysfunction that one would not normally discuss in polite company.

Before telling you why the need for a diary, the top photo is a lovely pic Laura sent last weekend from Fisherman’s Wharf in San Francisco, the first stop on her journey of Around the World in 80 Days for her Gap Year.

But back to me! I have been taking a new DMD (Disease Modifying Drug) called Tecfidera for five months, pretty much since if became available. It is an oral drug, taken morning and night – that in itself beats the hell out of intra-muscular injections or monthly hospital infusions with a slight chance of death through a rare brain disease. The side effects of Tecfidera are occasional ‘flushing’ and diarrhoea, which also results in flushing.  While irritating, these are far more desirable and manageable than death.

I’m having trouble posting pics in the body of the copy – will try to sort that tomorrow – in the pic of Laura with the two guys, that’s her second stop, New York City. They are two new Long Island friends helping her get to Times Square.

Anyway, Dr Noel says there is a new treatment now approved (but not through the PBS) that has come from chronic lymphocytic leukaemia stem cell research. He kindly wrote it down for me so I could Google it against his good advice – Alemtuzumab. Rolls off the tongue like sand. It has also been named Lemtrada, according to Google. I had heard a bit about this treatment – it is an infusion, done over five days, once only, followed by a three day infusion 12 months later. That’s it. And it has been getting some good results. To impress Dr Noel I commented that I believed that it basically re-boots the immune system and he replied, “Totally the opposite – it buggers it completely”. Oh. Yes, it pretty much strips the immune system bare and the ‘re-booting’ happens over the next eight years. Noel said that there are risks and side effects, mainly a low platelet count and thyroid problems that can also be treated, and no one knows the long term effects. I know why he prescribed non-Googling…

“Alemtuzumab has been associated with infusion-related events including hypotension, rigors, fever, shortness of breath, bronchospasm, chills, and/or rash. In post-marketing reports, the following serious infusion-related events were reported: syncope, pulmonary infiltrates, ARDS, respiratory arrest, cardiac arrhythmias, myocardial infarction and cardiac arrest. The cardiac adverse events have resulted in death in some cases.”

Oh! When Laura was in NYC as part of her exchange year she got a photo with two of New York’s finest policemen, wearing one of their hats. She bumped into another one and captioned on FB… “To Mum & Dad, apparently the drinking age in New York isn’t 18…”

Back to Dr Noel – he reckons the Tecfidera could still be finding its place in my immune system and suggests we stay on that for another six months and monitor for any changes before we take the giant leap into infusion land (they can do that at his main hospital, The Wesley in Brisbane). In the last five months we have noticed more weakness in my left leg and hand plus an increase in what they call ‘intentional tremor’ which means I now write like a doctor and can’t pick up pieces of confetti.

I was pleased to see that the new NSW Premier, Mike Baird, is looking at legalising marijuana use for terminally ill cancer patients. A step in the right direction that may assist people with MS one day. It really helps lots of MSers I know in the US. I have decided not to grow my own wee crop for now because I want to hold what cognitive function I have and because I don’t have spasticity that requires medication (weed works as a relaxant to improve sleep and lessen spasms and spasticity.

Speaking which, Laura bumped into a fellow MSer in New York and donated a dollar to his cause. Girl with a good heart. “She posted, I just love New York!” And I will try to keep posting, too.

Guilty or Innocent?

Posted on: Tuesday, Feb 11, 2014

SchapelleFirstly – apologies to anyone who has dropped in and discovered nothing from me latgely – it is a combination of no time, not much to say and being in ‘denial’. In the usual gamut of grief and loss people go through five stages – anger, denial, bargaining, depression and acceptance. With MS those stages can pop up at any time – I think ‘acceptance’ was the first one for me. Lately I decided on a little self-imposed ‘denial’ – and even my neurologist reckons that’s not a bad thing. For a while there I was living and breathing MS – house renovations, wheelchair use more common, disease ‘progression’ – I decided to take leave from my lovely MS forum, throw myself into my work, indulge in the escapism of television cinema and eating out and only be aware of the MS when it threw up something noticeable. Net result – I now have MS about four hours a day instead of 24.

Anyway, thought I’d drop in and throw my tuppence worth in on Schapelle Corby – seeing everyone else is. When I lived in Vanuatu a good mate was an ex-Scotland Yard detective and he had access to amazing info on shady people living in Vanuatu and also those not so local. His ‘word’ on Schapelle was the she was both guilty and innocent. Her father, Mick, a known drug dealer, was involved – as were airport baggage handlers – but they stuffed it up. The boogie board and bag with the marijuana was checked in at Brisbane airport, but was meant to be retrieved by a baggage handler and re-routed to Melbourne. That would explain the look of shock on Shapelle’s face when they discovered the weed going through Customs at Denpasar.

But leaving the Melbourne scenario out – what if Mick was sending it to Bali to be picked up by Mercedes on meeting & greeting the rellies and Schapelle was oblivious (best way to get a person to act natural is to not give them anything to stress about) – and then it all goes pear-shaped. Schapelle can totally tell the truth about not knowing how the hooch found its way into her bag without having to say that dear ol’ Dad went a bit far with this shipment (do we think it was a one-off?!).

Now, she wouldn’t dob in her darling father, especially when she found out he was dying of cancer – and there would be no point in Mick putting his hand up – she would still have been seized as the mule – best chance she had was to take the path that was taken. They say the acorn doesn’t fall far from the tree but a lot of the interest has stemmed from the fact that she is a pretty decorative nut.

My personal care factor is small – apart from the media circus phenomenon – about the same care factor as I have for the 11 other Australians in Balinese prisons, two of whom could find themselves dragged out at midnight any time soon and shot by firing squad without warning. Wonder if that will make the news?

Happy New Year!

Posted on: Friday, Jan 3, 2014

20140103_101857 (2)No big resolutions for 2014 – a few kilos off would be nice but it’s not set in stone. Or ounces. James has gone back to Sydney for six weeks work before uni resumes – had a nice farewell brekkie and Annie snapped this pic of the kids.

Lorz is enjoying her shifts at Sofra restaurant and, with a second job coming up, serious saving can start for the planned OS adventure.

Dave rang – said he went for festive drinks with his mates and checked his phone to find 18 missed calls from the wife… he reckons she must be pretty insecure – that worked out at six calls a day!

A four-shot family selfie!

Posted on: Saturday, Dec 28, 2013

family photo (3)

 

The Week That Was

Posted on: Saturday, Nov 30, 2013

Laura South PacificSunday – Laura home from a heady, wonderful week of celebration at Schoolies on the Gold Coast and mega-party at Roma – we had a family lunch at Qi’lin Chinese restaurant to celebrate not seeing her on the nightly news and then watched her toddle off to bed. Gosh the internet is an interesting place – I Googled ‘Laura Heydon’ to see if there were any photos of her partying and found this one on a site called ‘Noosa News’ showing some of the cast of South Pacific (Lorz second left).

WheelchairMonday – major demolition happening in the home office where they are modifying the exsisting structure to create an accessible bathroom. A lovely lass by the name of Louisa joins the team on December 16 – Louisa has spina bifida and is in a wheelchair so we need to make appropriate renovations.

I moved into the dining room coz it was pretty noisy in there – flat out with Rydges posts all this week – and there were other things to juggle…

Lethal WeaponTuesday – having written the new Travel Without Barriers website on the weekend, the site went live.  Here is a link – needed the website live before Wednesday so it could be eligible for nomination in the 2014 Queensland Disability Awards (Technology & Innovation category). The website ‘live’ is a soft launch – the main launch is planned for March after Louisa (above) settles into her role and the Life Without Barriers venture (below) is developed further.

Wednesday – had a good meeting with Life Without Barriers (www.lwb.org.au), a national non-profit organization that looks after people with disabilities – we are working together on developing a joint venture with Travel Without Barriers. We meet again to nut out the business plan and roles on December 16.

Laura at the FormalWednesday evening – the final Presenting Fairholme (Speech Night) – Laura performed in two choir numbers – very moving – and she won two awards – one for Prefect of the Arts and the other for Contribution to the Arts. A nice way to finish her school days. We went to the nearby Fire & Ice restaurant for a celebration dinner. The other thrill for the day was to see Laura in the local paper, pretty in pink at the Toowoomba Grammar formal with partner, Traecy and her friend Ellie and her beau, Thomas.

Thursday – Laura took off to the coast to spend a couple of days with her above mentioned mate, Ellie… ahhh, the joys of having a driver’s licence! Bit of a bummer – the side effects of the new drug, BG-12, kicked it – ‘flushing’ with an itchy rash. Hopefully, like the proverbial Christmas threepence, it will pass.

Abbott-and-PyneFriday – Disappointed with the government for the way it is using its ‘mandate’ – after campaigning against Labor’s unsustainable debt, lifting the existing debt limit from $300billion to $500billion, showing that the turn back the boats policy was no more than a slogan, trashing diplomatic relations with Indonesia and China and then trashing the Gonski education revolution after promising pre-election that it would be implemented. On the people smuggling front, loved this comment from savvy political journalist, Annabel Crabb – “Mr Morrison’s next news conference will be in 23 seconds’ time, at the top of Sydney’s Centrepoint Tower! And, unfortunately, the lifts are broken!”

Helen NortonSaturday – still Rydging – heard from an old friend from Vanuatu days, artist Helen Norton – her exhibition, New Works 2013, opens in Perth on December 5, after which she will be relocating to our neck of the woods – somewhere in SE Queensland – it will be great to catch up again! Here’s a link to Hel’s website – www.HelenNorton.com.au. The painting next to Helen is one of the new works, titled ‘Possum Crossing’…

Outdoor CreanSheeting and waterproofing done, plumbing and electrical pretty much done, plasterer did his thing and had some high-pressure cleaning in the courtyard (better than 30 second ‘outdoor crean’). Laura home safe and sound with a minor jellyfish sting while jet-skiing. Spoke with James – from his tone sounds like the job at HMAS Waterhen is boring him witless.

casablancaOh. And not really ‘news’ but caught Casablanca again – it cemented it’s place at the top of my best movies of all time – great script, acting, direction and when put in the context of being made in 1942 as WW2 propaganda, to present as pure escapist entertainment with great humour and one of the all-time great screen love stories is amazing. And it would never have worked in colour.

“…it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world. Someday you’ll understand that. Now, now. Here’s looking at you, kid…”

Oops!

Posted on: Wednesday, Nov 20, 2013

urine-sample-21384178This one made us laugh out loud. I will be starting a new MS drug called BG-12 in a couple of weeks and because it is still enjoying guinea pig status I had to have a blood and urine test so they can compare to how things are going with the drug (liver function side effects etc). Thing is, my neurologist writes like, well, a doctor and I couldn’t decipher the bit after FCB (full blood count) that asked for the urine sample… so… because I went to the bathroom prior to the pathology place, I gave blood and took the little plastic specimen bottle home to return when attended to. Later, having peed in the bottle, dutifully popped it in the accompanying paper bag and drove to the pathology place. Annie was happy to save me a walk so I stayed in the car just around the corner while she dropped it in. On being greeted by the receptionist Annie put forward the paper bag saying, “This is my husband’s urine sample and the paperwork is with it…” to which the receptionist replied, “This is the physiotherapist, perhaps you should try next door.” Whew – glad it wasn’t the fish & chip shop! Hmm… I wonder why Annie didn’t put my name on it?

Update

Posted on: Monday, Nov 11, 2013

Apologies to anyone who has dropped in and found no activity and thought something was amiss avec moi. Au contraire! Just as busy as the proverbial one armed paperhanger with crabs.

The Rydges blog has had a change of strategy and that takes up most of my week. On weekends I try to get a few hours to work on developing the disability travel niche.

The renovations have kept me nicely side-tracked as well – the carpet is no more, tiles have given the house space, light and ease to get around and the bathrooms should be finished this week.

Had my sister and hubby visit for a week from Adelaide and it was lovely catching up – it has been several years since we have.

SeedlingA hectic Year 12 term for Laura with final exam block last week. She is in Cairns at present for a few days with her exchange ‘host Mom’ from Michigan. She and Cindy are out at Green Island snorkelling as I type. Then Laura is back for her Valedictory Dinner and an audition Thursday for the Victoria College of the Arts.  Her final assembly is Friday, the Toowoomba Grammar formal on Saturday and Schoolies on the Gold Coast Sunday. Laura also appeared in two terrific plays at The Empire Theatre last week/weekend. Blink and Substance were chosen as part of the Seedling project to see two young writers have their work developed and produced. Come to think of it, Laura’s the paperhanger coz she also managed to get her driving licence amid all the chaos as well as line up a job starting at a Turkish restaurant in a couple of weeks.

And young James will only get about a week home at Christmas because he has just scored a nice job with Defence working in hyperbaric engineering at HMAS Waterhen in Sydney – ties in nicely with his love of diving the Advanced Open Water PADI accreditation he got in July.

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