27forParkinsons: Day 7 Parkinson's symptoms: Following on from yesterday and Bradkinesia ...not only did Bill endure problems with mobility, but also swallowing (again put down to his head and neck cancer)and possibly the cause of his recent aspiration - eating a meal became long and often difficult he lost the art of conversation, while I became an expert at holding a conversation with myself - he lost social skills, when family/visitors came he seldom moved from his position on the couch or joined in any conversations, (I often accused him of being unsociable - I now understand why) he was happy to stay home, seldom wanting to go out and in recent months his speech became quite slurred and he'd get irritated with me asking him to repeat. My aim by sharing these personal details is to raise awareness, not only of Parkinson's, Parkinson's with Dementia and Lewy Body Disease and to raise funds for research and support. Today I've conversed with a number of people ... Lindie took me shopping to spend my birthday and (last) Christmas vouchers. Spent time at Lindie's whilst waiting for two ladies to come and collect some of her beautiful craft work she'd sold .. one was a beautiful rocking horse, so cute, some little girl is going to be extremely happy .. very talented my 'foster' daughter ...thanks for a great day Lindie

27forParkinson's - Day 6 Parkinson's Symptoms Bradykinesia Bradykinesia can be the most disabling symptom of the condition and refers to slowness of voluntary movements and a lack of normal associated movements. Initially, it may be misinterpreted as slowing due to aging - however, it is out of proportion to normal aging. Bradykinesia affects critical aspects of daily living - walking, talking swallowing and speaking. In the eyes and face, it presents a decreased blink rate and a lack of facial expression. Bradykinesia is usually unilateral and initially may be confined to the distal muscles of the hand resulting in slow finger tapping and problems with fine motor tasks such as keyboard skills and fastening buttons. These difficulties are increased when dual-tasking is involved. Generalized bradykinesia is assessed by the overall slowing of all body parts - typically how easily the person rises from the sitting position and their speed of walking Looking back now, Bill began to shuffle mid-2019 and whereas in the past I'd had trouble keeping up with him walking he was starting to have trouble keeping up with me - I found it easier to do the grocery shopping early in the morning without him and once Coles started on-line groceries and home delivery we became regulars. In December 2019 when Leeanne and Caiti came to visit and we had a mini holiday in Melbourne was when the slowness and shuffling plus fatigue became very evident - once again this was put down to another long term side effect of the two bouts of intense radiation he had endured in the past. It would be another six months before the diagnosis of Parkinson's with dementia was given. Today's contact and connection has been having a blood test and chatting to the phlebotomist about LBD, phone calls from friends chatting with Tracey (my cleaning lady) and shortly I'm off to the Hydro pool for exercise (body and mouth) with Kath and Ellen. Beautiful spring day outside ...

27forParkinsons: Day 5 This challenge has given me more insight into Parkinson's and Lewy Body Disease and I've had family and friends thank me for enlightening them on the ravages of these illnesses ... Parkinson's Symptoms Parkinson's is a progressive neurological condition, which is characterised by both motor (movement) and non-motor symptoms. The provisional medical diagnosis is based on symptoms because there is no definitive medical test or radiological procedure which diagnoses Parkinson's. The diagnostic criteria is composted of four cardinal symptoms which are: Tremor Bradykinesia Muscle rigidity Postural instability TREMOR Although tremor is the most commonly recognised symptom, it is not present in all cases of Parkinson's (30% of those with the condition will not experience tremor) and tremor is common in other conditions. Tremor is related to an imbalance of neurotransmitters, dopamine, and acetylcholine, for this reason, tremor may be the least responsive symptom to dopamine replacement therapy. The classic Parkinson's tremor, if present, is described as a 'resting' tremor in that it is present when the rest of the affected limb is at rest. The tremor is regular and rhythmic and occurs at the rate of 4-6 times per second. Initially, tremor may be unilateral. However, with the natural progression of the condition it can be experienced on the other side. A classic tremor presentation of Parkinson's involves the thumb and first finger and is referred to as 'pill rolling' Tremor may be exacerbated by stress, anxiety, fatigue, and lack of sleep. It diminishes with voluntary action and is absent during sleep. Cognitive testing and motor tasks in a different body part increase the resting tremor. Unlike Essential Tremor the resting tremor of Parkinson's is less likely to be increased by caffeine or improved with alcohol. Bill developed a tremor of his right hand around 2019 and in recent months it had been getting worse ... as he'd say 'eating peas ain't easy anymore'. It was only in the last couple of weeks before he went into care that I noticed the 'pill rolling' about the same time appeared to need a 'security blanket/item' - he couldn't sit on the couch watching TV without playing with or holding the remote, his last weeks in care his Carlton rug (made by our beautiful friend Jan) became his security blanket. The past two days have been easy for communication and contact - today I spent time with my 'Tuesday' friends at the hydro pool before afternoon tea with Lindie. Lindie and I went to the recently opened The Gippy Nook, really enjoyed the coffee, (I think we were told it was Southern Addictions from Yarragon) and gourmet donuts, I opted for the Black Forest and Lindie Golden Gaytime - rather large and messy to eat (maybe a serviette and teaspoon would make the presentation nicer and easier for customers to eat). Over this 'wintery blast' of Spring weather - looking forward to some longer warmer days. https://www.27forparkinsons.org.au/fundraisers/valsellings

27forParkinsons: Day 4 Following on from yesterday where I briefly mentioned hallucinations: Visual Hallucinations - Well-formed, persistent and vivid visual hallucinations are a feature (personally I'd not call them a feature) of LBD, particularly dementia with Lewy Bodies. Hallucinations can be benign and non-threatening, but responses can range from indifference to concern and, in extreme cases, sheer terror. Often the hallucinations are of family members. They can also be of other people or animals including spiders and snakes. After the event, those having hallucinations are often able to rationally interpret and discuss their experience. Hallucinations may create fear in the person experiencing them or just be accepted. Additional stress such as an acute hospital admission may increase the frequency of the hallucinations. Looking back Bill's hallucinations really began after his major cancer operation in 2016,(which at the time our GP put down to the operation which took twelve hours), when he started to see people in the bedroom at night, over the years these became a regular, almost a nightly occurrence and eventually during the day. Many a night I had to herd cattle or sheep from the en-suite, send Tony back to Heyfield to use his own toilet, chase the cat away (we haven't had a cat for 35 years), be careful not to squash the baby, make sure the kids caught the bus, one night he was trying to put his shoes and socks on not once but three times, after the third time in less than an hour, my patience wore thin and I threw his shoes and socks out into the lounge room, to which he responded 'its your fault if I miss the bloody bus' sometimes during these hallucinations his demeanour changed, my quiet gentle giant became agitated and annoyed, never aggressive though, another time he 'woke' "where am I - I'm lost" "Suzanne will be waiting for me, will Valerie find me", I've searched for phones, china, keys, I've had to pretend to ring his brother Mike, one reoccuring hallucination was we had no money and no where to live - this one was so realistic he honestly believed it and told family and friends - I ended up making 'signs' and placing them on the bathroom mirror and kitchen tiles saying 'this is our home' 'we do not have money worries' these seemed to alleviate that fear and hallucination, another time he opened and shut the ensuite door four times before entering the bathroom, not long after I coaxed him back to bed, he called out "door open' and again got out of bed calling out 'where are you Mickalo' (Mickalo was a nickname of his Dad), one morning I found the bathmat on his bedside table along with his clothes, there was milk boiling over in the ensuite, many times he'd wake wanting to know where we were as this was not our house, there were just so many incidents which I've noted in my journal - mainly in point form to jog my memory. My friend Kath can attest to a daytime hallucination when 5 bob flew out of his hand - experts tell you to go along with the hallucination and gently guide them out of it, never dismiss it, so there we were Kath and I hunting for a coin which didn't exist. One of the afternoon episodes still makes me smile ... "why has YOUR Granddaughter got her head through the airconditioner grill" 'its OK she's moved it now' was my reply' I couldn't help smiling as Lilly would have needed a super super long neck as she is in England. Bills hallucinations became exaggerated when he spent time in hospital, he rang Lindie (by this stage Bill was finding it difficult to use his phone) very distraught telling her I was in the bed next to him in hospital with a broken back and sunburn' There was a lady who had been admitted during the night and placed in the empty bed next to Bill, can you imagine how scared this poor woman was firstly being put into a ward with three older males and then one of them believing she was his wife! Later in the afternoon he left me a message 'I just saw them wheel you past my bed, where are you, how do I contact you? - the lady had been moved to surgical ward. That evening he managed to locate a fire extinguisher and set it off, extremely proud he had read the instructions - why did he do this? because he truly believed that he Lindie and I had been detained, held against our will in hospital and the only way he could see to escape was to call the fire brigade' - this was one hallucination which he was able to describe in full detail. The next evening when I went to visit, the nurse on duty told me he was packed and ready to go to Melbourne - we had previously, prior to the fall that landed him in hospital and another Covid lockdown, planned a family weekend in Melbourne to make family memories with the Queenslanders - when I tried to persuade him we weren't able to go then was the first time I ever saw anger in his eyes as he accused me of keeping him from his family, being selfish and that everything was always about me, I knew that wasn't how he truly felt, that it was his illness but boy it still stung me! A few minutes later he grabbed my hand and said 'that wasn't nice was it - you know I didn't mean that' Next trip to hospital we insisted he was in a closed ward where he couldn't move around freely at night and that the staff would be alerted if he did - foiled again!! He escaped from Hospital, he was found on the street at the back of the hospital (at this stage he was unable to walk without his walker and was short of breath due to fluid around his lungs but somehow he managed to walk unaided and find his way out) he did mention he saw the Sri Lankans on his way past and they wanted him to jump onto the big sheet they were holding, oh and he wasnt looking for me, I'd driven past him three times so he was off to visit Elaine - was all a hallucination).. there are just so many stories to tell however the most distressing of all was during his time at Burditt Manor where he thought the bruising on the back of his hand was dirt and he scrubbed it so hard he broke the skin (he had paper-thin skin) and required 8 stitches. Sometimes Bill could recall every minute detail and other times nothing at all, he got to a stage where he told family and friends he just didn't know what was real and what wasn't any more ... one thing I know is that our love for each other never stopped. Yesterday I didn't find time to make a connection/communication myself .. family and friends beat me to it .... had a visit from Tony, Julie and Maddi, spoilt once more - another beautiful birthday cake made by Julie. Then a long chat, where I sat outside enjoying the sunshine, with Rachel and Kristen - so happy for Kris she has just landed her first job, with a Film Company that makes and edits films for schools ... Today I turn 75 - first milestone without my love .... https://www.27forparkinsons.org.au/fundraisers/valsellings

27 for Parkinsons ... Day 3 Bills journey with LBD/Parkinsons/Dementia - whichever label you want to use began long before we left Queensland to return to Sale -I'm uncertain if they started before or after he was diagnosed with prostate cancer but they go back 8-10 years. According to Dr Nathan whom we saw in Traralgon in July one of the first symptoms is Rapid eye movement (REM) sleep behaviour disorder - it is actually thought to be a core feature of LBD. It occurs when the brain is unable to paralyse the body during dreams. The person 'acts out' their dreams sometimes resulting in injuries to themselves or their sleeping partner. As it can occur many years before the development of cognitive symptoms, REM sleep behaviour is a potential 'predictor' of LBD. Many times I'd be woken to Bill calling out, trying to catch a cricket ball - where he actually leapt out of bed and hit the window, laughing out loud, having regular conversations, often around 5-530 am (could never understand what he was saying though) another time he was trying to push a cow into the bails (yep it was me he was pushing), many a night he'd knock things off his bedside table. At the time we laughed these episodes off. However, over the years they became more frequent and were combined with hallucinations. Tomorrow I'll go into details on some of his hallucinations ... Yesterday my 'connection/communication' was answering some condolence messages. Spent sometime outside yesterday - planted the pansies I'd bought on Friday - rummaged round in Bills veggie patch and found some new potatoes ... lucky for me Dylan rang or the potatoes would have turned to charcoal .. oops forgot I turned them on to cook. Long chat with D as he drove out to Victoria Point beach, he'd never been there before - our call ended with him trying to find a parking spot. Days are long and lonely so its lovely to receive phone calls from family interstate ... especially when its almost two years since you had a huge hug and pat on the head from a grandson. Managed to get some washing done and dry between showers - don't recall seeing a mosquito in the 4 years we've been in this house until yesterday - two nice big fat ones are no longer around to spread disease, seems its just the weather for them wet and humid.

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