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