SWEET MEMORIES ...

As I drove to Heyfield today (dental appointment - why do I travel to Heyfield because I've had a lifelong 'fear' of dentists, stems back to the old school dentist days, Mihar is not only good looking with beautiful eyes - well you can't help notice when you're lying back in the chair and is so kind considerate and gentle - makes the drive so worthwhile) I remembered back to the last time Bill and I went to Heyfield to have morning tea with Julie and our great-grandbabies Mac and Mia .. brought a smile to my face remembering how much Bill enjoyed that morning. 

Homeward bound I noticed an old derelict abandoned house which Bill always told me was IVP (immediate vacant possession) was now just a pile of old boards, more smiles as I told him you're too late mate, then I took the Myrtlebank Rd and remembered how he'd fooled JB one foggy winters night on our way home from badminton navigating him down the back roads - more smiles.

 Lovely visit from my friend Lisa who gave me a crystal angel to hand in my bedroom window so I can watch the rainbows it and think of Bill. 

 Lyn called in with a birthday card filled with dollars ... buy yourself something and put the rest to your fundraising for Parkinson's - I opted to put it all to Parkinson's in the hope that research at least makes life easier for Parkinson sufferers. I am 'blown away by how generous my friends and family have been.

 

27forParkinsons: Day 13 (Wednesday) Rapid Eye Movement Behaviour Disorder (RBD) this disorder often presents long before the diagnosis is made with 20-40% of people with Parkinson's describing a long history of disturbed sleep patterns with rapid eye movement behaviour disorder. RBD is included in the Parkinson's Associated Risk Syndrome (PARS) and it is now generally accepted that RBD is a manifestation of early changes in the brain stem which have not yet progressed to the point it affects brain structures leading to the motor signs of Parkinsonism. Excessive movement during the dream phase of sleep is a common feature that leads to acting out dreams and can result in sleep talking, shouting and intense and sometimes violent movements. This contrasts with the restricted speech pattern and movements evident during waking hours. These nighttime occurrences often lead to partners sleeping in separate beds or rooms. Discussion with the treating medical specialist is recommended. 

* I refused to consider separate beds or rooms ... as I was always worried if I didn't wake when Bill got out of bed what may have happened ... there were occasions when he was disorientated and tried to get out the window, or thought the walk-in robe was the toilet (it's OK I always managed to stop him in time) - one night in an attempt to catch a cricket ball everything went flying off his bedside table - he didn't wake or remember next morning 

-marking a football saw him fly out of bed

-milking cows ended with me being pushed and shoved

and so they went on for at least 8 years.

IT KEEP RIGHT ON A HURTING ... Johnny Tillotson 

 I cry myself to sleep each night

 Wishing I could hold you night

 life seems so empty since you went away

 The pillow where you'd lay your head 

 Now holds my lonely tears instead

 And it keeps right on a-hurtin' since you're gone  

Bill and I always enjoyed listening to music particularly from the '50s and '60s. Hadn't heard this tune for a long time ... seemed appropriate at the moment ... as it's what I do.

 

Sleep and Parkinson's Sleep disturbance is a very common feature of Parkinson's with a reported frequency of 60-90%. Sleep changes are challenging for both the person with Parkinson's and their sleep partner leading to fatigue and impacting on the quality of life. (Easier to deal with once you have a diagnosis and understand - but frustrating, annoying, when you don't)

 Sleep disturbances associated with Parkinson's include:

 Bed mobility changes 

 Rapid Eye Movement Behaviour Disorder

 Restless Leg Syndrome

 Sleep Apnoea Sleep fragmentation (broken sleep)

 Vivid dreams and nightmares 

Bed Mobility changes: Parkinson's affects automatic skills such as getting in and out of bed, rolling over and moving up and down the bed. Muscle rigidity, especially of the trunk, adds to this problem and can result in impaired bed mobility overnight. The use of satin nightwear or satin sheets is helpful. A review by an occupational therapist is recommended. They can introduce strategies and equipment which will be of benefit. A medical review of medications may assist with overnight mobility. (Bill had been assessed recently by OT and a new bed plus other equipment was to be purchased through his My Age Care package, unfortunately, he ended up in care before this happened - our waterbed looks like seeing it's 40th birthday now)!! 

Connection today was with my Tuesday Friends at hydro - today Margaret joined us for the first time. Hanging out for when the restrictions are lifted and we can enjoy coffee, toasties, and hot chips after our exercise.

LIFE GOES ON....Monday 11 October 2021 Not the best of days today ... hair trim = hair cut = little shorter than I wanted ... on the bright side only four weeks before my next appointment. Mel my delightful parcel lady delivered a parcel I knew was coming and which she knew the contents of and was ready to give me a huge hug - a tsunami of tears followed after I closed the door - reality hit, its not just a bad dream. Hugs from H after she finished work helped. Hence I wasn't in the mood for FB or blogging ... 27forParkinsons: Day 11 (Monday) Continuing on with Parkinson's Symptoms Microphonia - describes the decreased volume of speech often not obvious to the person with the condition (now I know why I was forever asking Bill to repeat - was beginning to think I was going deaf) Postural hypotension - refers to a drop in blood pressure especially on rising from a lying or sitting position. This can result in unsteadiness, dizziness and falls. In addition the medications used in the treatment of Parkinson's may cause a drop in blood pressure. (Bill first fell early this year, over the ensuing months the falls became more regular as did the dizziness and lightheadedness - when in Burditt Manor the falls become an almost daily occurrence and one day he had four.) Sialorrhea describes excessive saliva and is often due to the decreased frequency of swallowing and poor mouth closure. In addition, dry mouth can be experienced due to the medications used for the management of Parkinson's Sleep disturbances - a common early symptom is the tendency to 'act out' one's dreams and call out while dreaming. This can often lead to an unintentional injury to the person experiencing the dream or their bed partner (This symptom started with Bill long before we moved back to Victoria) Swallowing changes may occur in relation to liquids and solids (once again these were put down to the major head/neck cancer Bill had in 2016) Sweating and increased sensitivity to temperatures is often reported. Cold weather may exacerbate tremor. Hot weather may lead to increased sweating and postural hypotension. THE SYMPTOMS I HAVE LISTED IN MY POSTS REFLECT CHANGES SOME PEOPLE MAY EXPERIENCE. NOT EVERYONE WILL EXPERIENCE ALL SYMPTOMS.

ANOTHER COLD WET SUNDAY After arising early to ensure I had everything ready for the scheduled power outage ... it didn't happen ... lots of heavy rain overnight. Not enjoying this cold wet weather - it's almost mid-October we should be enjoying warm spring days regularly not just once a week. Went up to the Genny on Guthridge to post parcel to D - wow has the price of postage increased - cost me over $30 to post express post, insure and for signature on delivery. Back in the day! when we had the Post Office/Newsagency at Currarong registered mail covered you for a few hundred dollars should the parcel go astray and always required a signature and I'm positive it cost around $6 definitely less than $10. I willingly paid this as I know D is quite excited at receiving the Samsung Watch which was Bills. We chose to get the watch rather than the round the neck alarm from Mepacs as it had a fall alarm as well as the emergency call button - though pricy at the time it served us well - just one touch of the red heart and help was on hand - Bill thought it quite amazing to be able to talk to his watch - wasn't quite so impressive if he knocked it during the night and we'd be woken up by "Mr Sellings, Mr Sellings are you OK' hence he stopped wearing it to bed. Once Mepacs removed the emergency alarm function it reverted back to a normal smart watch. Quick trip into Aldi to get a couple of items I needed - no cut watermelon surely not everyone wants to buy a whole watermelon. Took some spuds to H as she'd forgotten to buy some - quick coffee and chat. Had an hour-long phone chat with Joan, with whom I went to primary school, we lost contact once we both married and had families but thanks to Facebook we reconnected a few years ago. One day we will be in the same State at the same time and get to meet face to face once again. Even though it's over 50 years since we last saw each other it seems just like yesterday and the conversation flows freely. Looking back I wish I'd had more time to sit and research Parkinson's and Lewy Body Disease ... there are just so many symptoms which Bill had that were never picked up on or were passed of as side effects of previous illness. I hope that by publishing some facts on Parkinson's/Lewy Body Disease enlightens others and maybe one or even more can receive and earlier diagnosis and receive treatment and therapy earlier. 27forParkinsons: Day 10 Parkinson's Symptoms (continued) Anosmia - refers to a decreased or loss of sense of smell. This often precedes the diagnosis. (Another symptom Bill had) Anxiety - is a common phenomenon in Parkinson's and can exacerbate the motor symptoms (Bill had bouts of anxiety which came on suddenly and for no apparent reasons) Constipation - is a common early symptom and is due to reduced mobility of the intestines and may be exacerbated by a reduction in physical activity and the introduction of Parkinson's medication. (yep suffered that one too - had it under control just prior to Bill going into care) Bradyphrenia is the term used to describe slowness of thought experienced by people with Parkinson's. (became more noticeable in the last few months) Depression - is commonly experienced prior to the diagnosis and is due to a chemical imbalance. A reactive depression may occur with the diagnosis and support and information is essential at this time. Frequently apathy and lack of motivation are evident and are mistaken for depression. (tick the apathy and lack of motivation) Fatigue -which is not relieved by rest, is a common early symptom. This can be related to a variety of causes including disturbed sleep patterns due to changes in bed mobility, restless leg symptoms, urinary frequency and/or leg cramping. (restless sleep and fatigue increased over the past few months - hence fatiguing us both) Festination of speech - describes the change in verbal fluency. Impotence (long-term) - is frequently reported Micrographia - refers to the changes in hand writing - (especially cursive) This becomes smaller in height and the written words may be unclear by the end of the sentence (Bill found great difficulty in the last few months to sign his name - maybe handwriting should be included in the annual 'age test' done for over 75's - (gee I better start practising counting backwards from 100 by 7 and spelling world backwards! ) as this could give an earlier indication that Parkinson's is lurking

27forParkinson Day 9 Parkinson's Symptoms Postural Instability Postural instability and gait disturbances often develop later in the progression of the condition. If a loss of postural reflexes and resulting falls occur early, it is not suggestive of typical Parkinson's In early Parkinson's the posture may show a slight flexion of the neck or trunk with a slight lean to one side. Gait changes include reduced arm swing, shortened stride height and length which may lead to shuffling. In addition to these four cardinal motor symptoms there are many others which are also considered in the diagnostic process. Often the non-motor symptoms are more challenging for the person living with Parkinson's Bill had a slight stoop which I first noticed before we moved back to Sale .. I put it down to him sitting at a desk, resting on his elbows, when selling Art Union tickets for Mater. As previously stated his shuffle, short steps and tardiness walking appeared in 2019. I hadn't noticed the lack of arm swing until his physician pointed it out. No power tomorrow so I've spent time today prepping some craft work I can do without need for electricity - have gas hot plates so can boil water for coffee. Depending on how light and warm my house is tomorrow might have to go round to H's - cleaned Bills laptop for her - now to set it up again! Mepacs finally disengaged the alarm on the Samsung watch which now renders it to a normal watch - was really worth the money for the amount of times we used it ... peace of mind if Bill had a fall, whenever we needed an ambulance just needed to push the red heart speak to Mepac staff and they did the rest ... going to pass it on to D as he doesn't have a watch and its way to big and manly for me - I know he'll respect and enjoy it - Was good to hear from my friend Marg last night letting me know she had survived her knee replacement operation yesterday morning. Already talking about rehab - walking and getting back to hydro - she's a real 'goer' our Marg. Had big dose of the 'blues' today - one month on ... single life takes a lot of adjusting ... the 5 weeks in respite didn't prepare me for this loneliness - I remembered to water the garden today, picked some silver beet (will need to plant more soon) little things like seeing Bills soap still in the shower can set the tears flowing .. they tell me it gets easier 😢😢

27forParkinsons: Day 8 Parkinson's Symptoms Muscle Rigidity ... may not be apparent to the person with Parkinson's but is felt by the medical practitioner in limb muscles when they are passively moved. It is described as 'lead pipe' or 'cogwheel' rigidity. Muscle rigidity is commonly present in the wrist, shoulder and neck. It may also manifest as a slightly flexed elbow on the affected side. Early reports of a painful shoulder are associated with increased muscle rigidity and tone. As the condition progresses muscle rigidity can lead to the characteristic forward flexed posture. Bill managed to escape this one!!! Contact and communication ... hit a speed bump today, thought I was up to ringing friends for a chat ... was OK until Lisa was busy and her phone went to message bank ..... 'twas fine as Lisa rang me back before she listened to my blubbering - I met Lisa when she did a presentation on the My Age Care Packages, at a Carers Support meeting, we had an instant connection and Lisa has been a great support person for us over the past couple of years. Anyone looking at applying for My Age Care Packages contact me and I'll give you Lisas' details. Jan contacted me last night someone was seeking details regarding my Mum and Dad through the Drouin Warragul and Surrounds Facebook page - I responded but havn't heard from him ... though he responded to Jans messages. Visit from Heather and Hannah today - I think Han is starting to understand 'no more Grandpa' it must be difficult when you are non-verbal. Love these visits, Heather and I can chat for hours, last time she was here suddenly it was 6.25 and getting dark, not a great trip to Yarram at the best of times but a little more caution needed when our native animals are likely to be out and about. Just Kath and I at pool today ... there was one other couple there but they left about 5 mins after we got in ... hydro pool to ourselves. Lawns looking good again ... thanks Lindie

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