FAMILY FRIENDS AND PHONE CALLS Day 2: 27forParkinsons One question I've been asked a lot lately is 'when was Bill diagnosed with Lewy Body' ... only on the 20th July this year when he went to see another specialist after his original one retired .. prior to that the diagnosis was Parkinson's with Dementia .. to even get to this diagnosis took years, due to the many other health issues Bill suffered over the past ten or so years ... How is Lewy Body Disease Diagnosed: This type of dementia is diagnosed by taking careful history of the pattern of symptoms, and by excluding other possible causes such as Vascular dementia and Alzheimer's disease. A brain scan may reveal brain degeneration, but the Lewy bodies can only be identified by examination of the brain after death. LBD is similar to Alzheimer's disease in many ways, and in the past, it has sometimes been difficult to distinguish the two. It has only recently been accepted as a disease in its own right. It can occur by itself or together with Alzheimer's disease and/or Vascular dementia It may be hard to distinguish LBD from Parkinson's and some people with Parkinson's develop dementia which is similar to that seen in LBD. LBD and is accompanying disorders can present diagnostic challenges. LBD is still now known. People with LBD can present with a variety of problems in the early stages of the disease.
They may have problems with autonomic (the system that automaticalliy regulates bodily functions), cognitive (thinking) behavioural or motor functions, Getting a diagnosis can be more challenging when the motor signs are not as evident. Often the person dismisses the concerns of others, presents well at a GP consultation and perfoms well on intial screening tests such as the Mini Mental State Examination (MMSE) A 'watch and review' plan is sometimes suggested or medication is offered for the most pressing complaint. Yesterday I had coffee with my friend Bev - my how the time flew by - suddenly almost two hours had passed us by - I hadn't seen Bev for 3-4 months ... won't be so long next time! ...since May actually when I had to give up as physio/gym as I wasn't able to leave Bill alone and had no respite carer ... I joined the oncology rehabilitation physio group on Fridays early in 2020 and after two weeks Victoria went into our first COVID lockdown .. we had a few stop starts where Patrick and his team were able to have us in on a one-to-one basis. Earlier this year the group sessions started up again, new friendships were formed - Jo, Bev, Ruth, Julie, Barb and I (Paul came only to the education sessions) - we kept those 'boys' on their toes! Must organise a girls catchup soon. Had over an hour long phone call from Carolyn (and Riley) last evening - could hear the storm which tore through the Gold Coast in the background. So looking forward to when we are able to travel interstate again and we can visit. Despite my best efforts (putting them in the bathroom at night away from the heat of the lounge ) the majority of my flowers are dying - I think they've lasted well almost three weeks ..

27 FOR PARKINSONS ... GRIEF ... GRIEVING ... Its been a long time since I last posted a blog and in that time the World has changed ... COVID The past two years have been such a roller coaster ride, some real highs and the lowest of lows I'm not sure where to start - my mind runs in all directions at the moment - On September 11 Bill lost his battle with Lewy Body Disease, just two days after his 85th birthday. and just 7 weeks after he was diagnosed with LBD - previous physician/geriatition had diagnosed Parkinsons with Dementia. Over the years I've endured grief with the loss of my Dad, my Mumma, a baby Granddaughter, my brother and a very close friend but none of these prepared me for the grief I'm feeling now, the grief of losing one's soul mate of 38 years. Grief that comes in waves, sometimes it hits like a tsunami, sometimes the crying is so deep it takes my breath away, the hollow sick feeling, tears that come when you're trying to be 'brave'- yesterday was my annual mammogram and ultra sound date to make sure that 'Dotty' had been erradicated from my body ... there I am right boob in the machine when the tears came ... poor Andrea thought I was in pain, well maybe there was a little discomfort but not enough to make one cry! Explanation needed! Then there's the mind to deal with too ... what if, if I had, maybe I could have, did I do enough etc etc etc I'm sure being a Libran helps me weigh up the good against the bad, the positive against the negative, there's always a balance The five weeks Bill was in Care at Burditt Manor gave me an insight into what could have been ... Bills worst nightmare of just existing not living, hence there are the times when I give thanks that he's now resting in peace and that his mind and body are no longer tormented, no more falls, no more hallucinations ... but then again I so wanted more time with my love. We had discussed our wishes for 'when the time comes' and Bill wanted a 'private cremation and to be chucked in the lake' (his words) he knew I drew the line at the Lake ... I know the reasoning behind his decisons. Unfortunately, due to Covid restrictions and border closures a memorial service is not possible at the moment - but it will happen There will be more tears I know .. there's still all the legal 'stuff' to do when 'that piece of paper arrives' (whats the bet it arrives on Monday, my birthday, I reckon that would be Murphys law) ... there's birthdays, Christmas and other milestones which will be hard without his presence. I'm blessed with loving caring family and friends ... My 27 for Parkinsons Challenge begins today .... I opted for the Connect/Communicate option ... My goals are: to raise awarenes of Parkinson's disease to raise much needed funds for reasearch and support for Parkinson sufferers and their families to share factual information on Lewy Body Disease (as many including health professionals are unaware of this form of Parkinsons/Dementia) to share Bills journey with LBD (the good, the bad and the downright ugly) in the hope it may help others recognise signs earlier to re-open my Blog (I found blogging so therapeutic during my Breast Cancer journey) where I will go into more detail on Bills journey, our feelings, how it affected our lives to connect with a friend or family member daily - this may be in person, via phone, text or social media. WHAT IS LEWY BODY DISEASE? Lewy body disease is a common neurodegenerative disease of ageing. This means that the disease causes gradual brain damage. For reasons not fully understood, it occurs when there is an abnormal build-up of a protein called alphasynuclein in brain cells. These abnormalities occur in specific areas of the brain, causing changes in movement, thinking and behaviour. Lewy body disease includes three overlapping disorders: Dementia with Lewy bodies Parkinson's disease Parkinson's disease with dementia This overlap results in the disease being called a spectrum disease. #27forparkinsons #parkinsons #dementiaawareness #parkinsonwithdementia #lewybodydisease

IT'S BEEN WAY TOO LONG! OVER A MONTH IN FACT!

Friday 11 January 2020 Time flys when you're having fun - so they say - however, time just seems to fly for me. I can't believe it has been over a month since I last blogged ... yet here we are almost midway through January. Our three-day city break with Leeanne & Caiti was much needed .... we visited the Gingerbread Exhibition, Melbourne and surrounds all made with gingerbread so you can imagine the aroma, yes it was a little hard not to eat some! We enjoyed some great food ... dinner at Maccaroni (Italian) in Manchester Lane, which is next door to Breakfree on Collins where we stayed - if you're looking for accommodation in Melbourne CBD this is a comfortable, clean and reasonably priced hotel also recommend Cafe Issus 8 Centre Place (just down from Breakfree on Collins) the food and service were first class - I'm a little fussy, odd, weird call it what you like but I only eat eggs at home and then only scrambled or in an omelette and am often made to feel 'different' when ordering breakfast/brunch, but not here my tomatoes and bacon on toast was scrumptious with the tomatoes cooked not just warmed - perfection! and the raspberry hot chocolate was heaven. Cafe Issus also has a 'pay it forward' where you can donate a meal for someone homeless. Bill had his half-yearly check-up at Peter Mac, I shudder every time the camera is put down his nose and throat, brings back memories of a traumatic time for me back in 1972, once again he got the all-clear from his surgeon Jessica. Next visit in June. Dylan landed a contract working during his Uni break checking and packing IT systems for the Queensland Electoral Commission and told us he wouldn't be able to make it home for Christmas - I was worried about him having Christmas on his own, no Christmas dinner but he assured me he could go to his mates family if he wished .. so can you imagine the delight, the screams, the tears, the laughter and joy when he walked in unannounced on Christmas day .. he flew into Melbourne at 1.20 am and Jack had driven down to pick him up (a three hour trip from here - six hours driving now that is brotherly love) ... certainly made it a Christmas to remember ... he later told me he felt bad lying to me! New Year's Eve came and went with little fanfare - too old now to party and no fireworks locally due to the bushfire situation. Sale has had several days where we have been shrouded in a blanket of smoke from the bushfires, which have been devastating with Mallacoota holidaymakers and residents sheltering on the beach and needing to be rescued by the defence force boats and helicopters ... fires like this have never been experienced in Australia before, some firefighters saying the air was on fire, not just here in Victoria, but NSW, SA and King Island ... yet our Prime Minister still denies climate change. Millions upon millions of dollars have been donated to relief funds, our sports stars, overseas celebrities have donated millions, I'd like to see some of it go towards the purchase of new, better equipment, water bombers and firetrucks and name them after them .. I can just see a bright red shiny firetruck named Demon (Alex DeMinaur) a water bomber named Thor (Chris Hemsworth) maybe even a Pink fire truck ... just my thoughts. We marked Heathers' 53rd birthday with a couple of family dinners ... Wednesday marked 11 years since Mum left us. Wondered why one of my indoor plants was looking very ill .. didn't feel like it was over or under watered ... then I discovered the reason - one Grandson and one Granddaughter decided it would be fun to hide some of the salt rocks off my lamp (yes I did think there were some missing but wasn't sure) in the pot plant - would have been OK if they hadn't put one on the soil ... mostly the pranks they pull don't have a serious consequence - I've found my cutlery drawer rearranged, the labels on the four-panel light switch changed around, sweet bowl in the Christmas tree just to name a few ... just don't let on how much it amuses me! So I've done a month on Femara now ... side effects ... not sure ... hot flushes and night sweats are they medication or weather or sinus infection (from the smoke) only time will tell I guess, am I just lucky I get a second go at menopause!! Cannot speak highly enough of the work of the McGrath Foundation Breast Cancer Nurses, mine rang on Tuesday to check on how I was progressing and honestly I'm just so so lucky that nothing has really changed in my life, I'm back using the treadmill and once the hydro pool is back in operation (asbestos discovered so undergoing major works at Aqua Energy) I'll be up there exercising. Life is for living ... and that's what I intend to do.

RADIATION - DONE AND DUSTED!

OMG ... two full weeks have passed since my last blog - and full and memorable weeks they have been. Since then I've completed radiation therapy - with nothing more than an itchy rash. I found the tiny icepack I'd been given after the lumpectomy and that combined with the cold Aqueous cream (keep in fridge Sally the breast cancer nurse told me) give great relief - five days on its gradually subsiding. I've been truly blessed with having an amazing support team in my family and friends, they've been my chauffers, laughed with me, shed a tear or two with me, 'shouted' me meals and given up three hours of their day for me (travel to Traralgon in 45 mins each way plus treatment time). On Monday, December 2 when Lindie & I walked into the radiotherapy department we were 'blown away' by the transformation over the weekend - a forest of Christmas Trees - each one decorated with a different 'theme', brick walls, a fireplace and a wooden Christmas tree with an array of homebaked Christmas treats packaged in cellophane for patients and their supports to enjoy .... and enjoy we did! my favourite was the tiny mince pies - similar size to what Mumma used to bake - I'm not a fan of the supermarket variety, find they are too big and have too much pastry for my liking. One of the staff members in IT makes the decorations and did the decorating over the weekend and I trust she was able to witness the appreciation of those of us undergoing treatment. Lindie has offered to assist next Christmas - I would too but compared to Lindie my decorations are very amateurish! I saw a psychologist ... however in the time between getting my referral and an appointment I'd had a huge meltdown - I won't go into details but to say to it involved silverbeet - silverbeet which became very finely shredded - after which I physically felt like a weight had lifted from my heart and shoulders. Deb put it down to grief and the fact I'm a carer and a supporter and forget to look out for me ... to help me overcome the overwhelming teary times (simple things like medical staff asking me to confirm my name set me off which then meant I needed to explain I wasn't scared just grieving) she suggested to think of silverbeet as a trigger word which will make me smile. Deb believes I understand and have control of my mental wellbeing, that I just needed to have it confirmed and talk with someone independent .. so no further visits required. Grief affects us all in different ways ... and you don't grieve if you haven't loved! Just don't put off seeking help if you feel you need it ... unfortunately there is still some stigma out there regarding mental health ... A friend of Lyns' gave her a copy of The Beacon (Breast Cancer Network magazine) for me to read and in there I found an interesting letter from a reader which said "don't say to recently diagnosed family/friend 'call me if you need anything' instead 'take the bull by the horns' and do something (make a meal, organise to go with them to appointments, take them shopping or for a coffee, contact them instead) as for most it's hard to ask for help even though it's been offered. And for those like me who do find it hard to ask for help ... people really don't offer if they don't mean it Leeanne and Caiti are holidaying with us for ten days, the past few years we have had an early Christmas with our Queensland family which unfortunately this year we couldn't manage, hence they have come to us. Tomorrow we are off to Melbourne for two nights before they fly home on Wednesday. Bill has his half-yearly check-up at Peter Mac on Tuesday - then its shopping and Christmas lights and decorations. It will be a lovely break to celebrate the conclusion of radiation. After three months of trying and numerous treatments, my nails were still flaking and breaking so with a little gentle persuasion from Caiti I now have some new acrylic Christmas themed nails ... silly but true they are a big morale booster! Started taking Femara on Wednesday - so a little early yet for any side effects, but hey I'm not going to get any! Posted off a few Christmas cards, mainly to those who are not on Facebook and that we don't see regularly ... and yes the first few cards we received were ones I'd missed ... oops My beautiful sister-in-law and niece had a lovely mother/daughter trip to Uluru - I could hear the joy in her voice yesterday when she rang - Christmas won't be easy for her this year. Each year my tradition is to watch Carols by Candlelight on Christmas Eve by the light of three special candles (Dad, Molly and Mum) this year we add another two for Pete and Robyn. Carols by Candlelight has been part of my Christmas since a little girl, I remember Mum purchasing a Carols book at the Newsagents and we would sit around the radio listening and singing ... then came TV and we could watch this amazing spectacle. Attending a Carols by Candlelight is on my "Wish List' and Robyn and I had been planning on going in 2020. One of Bill & my favourite Christmas eve memories is Mum singing along to a Carol being sung in Latin - after all those years Mum still remembered Latin from her highschool days. Finally some more warm weather predicted for the coming week ... bring on those lazy hazy days of Summer.

HALF WAY ....

Sunday 1 December 2020 First day of summer and the forecast isn't looking at all like producing the typical warm sunny summer day we Aussies love - cloudy, windy and showers with a top temperature of 18c and we have a scheduled power outage from 8.30 -4.00 - first thoughts were a trip to Lakes Entrance and enjoy fish, chips and scallops on the foreshore but Mother Nature said not really a good idea, next idea movies and shopping at Midvalley Morwell however my body (and mind) is telling me different - there's a lot of things on my 'To Do' list that can be done without power and Sale has a cinema (albeit old and in need of a good revamp) and shops. Half way through radiation treatment ... so far all going well - have had a late afternoon 'nanna nap' - unscheduled whilst watching the cricket! -the past two afternoons so maybe fatigue is starting to creep in, but no signs of burning or blistering. The time travelling to and from Traralgon gives great opportunity for some precious 'one on one' time that is often hard to find these days - Monday Heather & I had some Mummy/Daughter time - morning tea, shopping and lunch, Spotlight was on the agenda Tuesday with Lindie, lots of laughs with Shell on Wednesday, my long time friend (actually the first friend I made when we moved to Sale in 1970) Noelene was my 'support' on Thursday and Friday, usually when we meet up we chat about whats happening currently so it was lovely to look back on times gone by and remember those early days when our kids were babies, velvet soap and shining kitchen sinks and lots of other wonderful memories. Lunched at Eviva in Traralgon Plaza on Thursday - good food but busy and noisy. Friday Noelene had booked for lunch at Victoria Rose Teahouse in Rosedale as a special treat - we shared a Ploughmans lunch followed by heavenly lemon meringue cheesecake sitting by the open window with the scent of roses wafting in was so peaceful. I am blessed with some wonderful friends. Tuesday I saw Dr Joshi my medical oncologist regarding stage 3 of my treatment, once radiation has finished I'll take Femara for 5 years ... not jumping for joy at this however if it is going to help prevent the recurrence of cancer and prolong my life 'so be it' ... some of the known side effects are just what I don't need: weight gain, fatigue, aching muscles and emotional swings .... WOO HOO ... I can gain weight quite easily now, my emotions are still understandably up and down at the moment without medication! Dr Joshi ordered a bone density scan for comparison annually as Femara has been known in some cases to cause brittle bones. Positive thinking, meditation, exercise, fresh air and healthy eating = my plan of attack against this little yellow tablet! Bodhi & Lulu turned four on Wednesday - the past two years we have been up North on holidays and there to celebrate with them (and twice cancer has kept us from being there, first Bill now me) yesterday they 'face timed' us to say thank you for their birthday cards and gifts - sometimes you just have to love modern technology. Had a long phone call from Dylan on Friday night - once again I'm a very proud Grandma, his exam results were exceptional again top score is 7 and he achieved 7 in three subjects and 6 in his fourth which should almost guarantee him a scholarship towards his study exchange in South Korea next year. I've been a Western Bulldogs member for over 15 years now (a fan for way way way longer) just a three game membership, more just financial support for the Club I love, With this years automatic membership renewal an email was sent out with a 'scratch and win' feature as a thank you for continued support .... I won a membership upgrade ... General admission to all home and away games .... happy me, hopefully I'll get to a lot more games next season. Our lovely Sri Lankan neighbours who are employed at a local market garden keep us supplied with fresh green vegetables, lettuce, cauliflowers, broccoli, cabbage for which we are so grateful as are the family members and their friends we share the produce with ... cooked up a few dishes yesterday to fill the freezer for dinners later in the week ... one huge cabbage, doubt I've ever seen one so big, obviously too big for the supermarkets, only used half yesterday in making Chow Mein and coleslaw - another batch of Chow Mein coming up this evening (when the powers back). Heather was a happy little vegemite as I cooked up a couple of extra meals for her and Matt. On Friday my Brother Peter was remembered at the Ecumenical Service hosted at St Stephen's Cathedral Brisbane by the Asbestos Disease Support Society. It is asbestos awareness week - please be careful of asbestos. 55 butterflies representing the 55 people who have lost their lives including Pete were placed on a canvas - I wish I could have shared the photo with you however they have a copyright on them. Sadly 4000 have died nationally this year. Till next time ...

LOVE, SUPPORT, FRIENDSHIP AND KINDNESS ...

Sunday 24 November 2019 I'm not sure where time disappears to … each day just seems to meld into the next lately. A few blogs ago I mentioned how the Sale Cancer Support Group was invited to participate in a series of short videos titled Gathering of Kindness .. these videos are now on You Tube, if you have a few spare minutes you might like to watch a few of these real life stories November seems to have been a month of changing temperatures and strong winds, very little rain and thankfully no bushfires. Air-conditioner was going full blast on the trip to Traralgon (and home) … stopped of at Del Jardine in Rosedale and purchased my purple pot to plant Robyns daffodils in - amazed how affordable the pots, plants and giftware there is (shall go back one day without Bill so I can really have a good browse) - loved the lifesize cow and the larger than life Panda in the plant section - worth a visit just to see The radiation process was a lot quicker today and we didn't upset Brenda who treated me to a hot chocolate and Bill a Brazilian coffee (no cheap instant stuff for us!). Once back in Sale a quick dash into Queen of All Things to purchase a Funky Monkey Deo Ball (a clear crystal 100% pure and natural Himalayan organic mineral salt deodorant) Jenn (French) has an amazing array of 'stuff' as her business name suggests she really is Queen of All Things plus the other side of her business is Jenn French Massage and Wellbeing Centre Thanks Jenn - deodorant works a treat. No school for my Princess on Friday which meant by driving to Traralgon she was able to add another hour to her My Learners tally - we left Lilly at Stockland to shop whilst we travelled on to LVCH for my radiation - what a hoot! my radiotherapists we Sumtpa an Australian born Sri Lanken and Widith who was born in Mauritius, these two guys had me laughing with their banter. Went to The Wedge for the Taylor Henderson concert with Noelene - Taylor has a great voice and his showmanship and rapport with the audience made for a really entertaining evening. Pride of place in the lounge is the Christmas Tree … took me 5 hours to decorate (because I'm a perfectionist!!) but I'm happy with it, just need a couple more little trinkets which I'll pick up tomorrow …. H is rostered to take me to be zapped tomorrow and we're having a Mummy/daughter lunch and shopping day afterwards - watch out KMart! Started to wrap a few of the Christmas Gifts I've managed to cross off my list so far - but once again got distracted - cricket! Aussie Aussie Aussie Oops hope Bills not too hungry yet … forgot the time - luckily I've most of dinner prepared.

ONE DOWN - FOURTEEN TO GO ....

Yesterday was day one of my radiation schedule …. I feel I've prepared myself as best as I can for this experience … I've read My Journey, asked questions of my medical/radiation team and yes I did Google some too! The best laid plans sometimes never come off and unfortunately Heather wasn't able to get the day off work and all other family and friends were unavailable, so Bill and I set off - I was confident that any fatigue I may experience won't happen until mid next week at the earliest - stopping at Clarke Rubber to purchase the weather strip for the lounge window, we arrived at LVCH half an hour early and managed to obtain a disabled park (Bill has a sticker which we seldom use) in the top car park. By now I was 'hanging' for a coffee, we headed to the café and decided to take advantage of the tranquil comfy radiation centre waiting room and consume it …. oops we upset Brenda (not really she was just pretending) as its her job to provide us with coffee and biscuits. Hannah is my radiation assistant this week and after weighing in (I like my weight better when I'm not fully clothed and with shoes on) I'm shown a row of four cupboards each one bearing an Australian native animal sticker - my gown is on a shelf (complete with my name) in the Ringtail Possum cupboard. After donning this beautiful designer gown, which just meets in the middle but hey I've flashed my boob at so many people the past two months what's a couple more! its off to the radiation 'bunker' I'm introduced to the team in the viewing room who all smile and assure me they will be watching me and can hear me should the need arise that I get traumatised or overcome - which is comforting to know. Off with the gown, hide behind the green modesty sheet and up onto the bed, feet into their correct position - somethings wrong my heads not reaching my 'mould', have I shrunk this past week (wouldn't mind if it was girth not height) nah just needed a minor adjustment on the bed and voila all is good, I lie there looking at the palm trees complete with coconuts on the ceiling whilst Hannah and Sumpta (I think that is the lovely young mans name) ensure that all the measurements are correct and that I'll be zapped in the right spots … then I'm alone in the room with the machine, I lie there silly thoughts going through my head 'glad those trees aren't real, don't want a coconut landing on me' suddenly I'm aware of someone re entering the room and Sumpta is there, handing me the rope to pull myself up and handing me the green modesty sheet once again, I head over to the chair with my basket containing my clothes and as I don my blue gown and wander back to the change room to get dressed, fold up my blue gown and put back into the possum cupboard for tomorrow. Tomorrow will be even quicker I'm told. After a quick interview with Jenny, one of the nurses who gives me a tube of cream and an instruction sheet, answers the couple of questions I have, suggests that I should have a driver each day as fatigue can set in at anytime and without warning - its time to head home. Lyn calls in just after we arrived home - she has a terrible cold and won't come inside so we chat through the security door and arrange some dates she will drive me to Traralgon. Shell rings to see how today went and find out my future appointment times - we work out a couple of dates she is able to take me and tells me to ask Rob to take me somedays, which I've been loathe to do, I know he's my son and he wants to support me but he has a business to run and now is his busy busy time as the grass just keeps growing fast and his clients like their lawns pristine. I take her advice and yep he's happy to do at least one day. Heather calls in on her way home from work - suggests the days she will try to get off to take me. Oh how much simpler it would be if we had Radiology here in Sale as well as Oncology …. maybe one day …. whilst its only a 45 minute drive to Traralgon the return trip takes at least two hours out of your day. Time to get ready for day two.