THE TRIFECTA - FRIDAY 15 OCTOBE5 2021

I GOT THE TRIFECTA .... N0 N0 NO .... not gambling -

Don't need to go back to Dentist for 12 months

Thyroid medication working and 

TWO YEARS CLEAR of Breast Cancer

27forParkinsons: Day 15 (Friday)

SLEEP AND PARKINSON'S (con't) 

Sleep fragmentation (broken sleep) 

Night-time awakenings occur for a variety of reasons in Parkinson's and it is essential to assess for a regular pattern or cause.

Common-sense causes include -

•  the breakthrough of motor symptoms such as tremor, stiffness or muscle rigidity, maybe due to wearing off of medication. Discussion with treating medical specialists and a review of medications may be required
•  Early morning dystonia or cramping of the lower limbs is a common occurrence and should be reported. Discussion with the treating medical specialist and a review of medications may be required 
• Nocturia (passing urine overnight) may become more frequent and resettling back to sleep may become more difficult. Fluids should not be restricted throughout the day. For males, regular prostate examinations and blood tests are recommended
•  Depression can lead to a disturbed sleep pattern and should be discussed with GP or specialist
•  Sleep hygiene measures such as a regular sleep schedule, a regular exercise program and a reduction in daytime napping may assist. 
•  Alcohol and caffeine and other stimulants should be avoided in the evenings.
•  Suitability for sleeping tablets must be assessed on an individualised basis as they may cause increased daytime drowsiness and increase the risk of fall

• 👀Nocturia was a huge problem for Bill - sometimes up every 30-40 minutes .. medications were tried with no positive results so then stopped. Resettling was easy for Bill - but not me! This was also put down to a side effect of him having had prostate cancer. Daytime napping (as those who visited us would know) was a standard pastime for Bill) - I'd try to keep him occupied and awake sometimes it worked sometimes it didn't. He avoided drinking of any description after dinner - (which rendered him a great designated driver until his distance perception started failing and he had to stop driving) 

BEAUTIFUL MORNING FOR A WALK - Thursday 14 October 2021

Today I joined the LCHS Carers group for our monthly Pathways for Carers walk. I am able to still attend Carer meetings and events for another 6 months - which I truly appreciate as I've formed some great friendships with other members together with a wealth of knowledge and support from other health professionals. It was over two years since I had walked around Lake Guthridge which was looking calm and peaceful with the sun shining down. (I can understand why Bill wanted this to be his resting place) After our walk, we once again enjoyed each other's company over coffee and cake at Portside. Thanks to J who I only met today for a generous donation to my Parkinson's fundraising. Over $800 raised now ... thank you all my beautiful friends.

Dr's appointment in the afternoon - yes it's my week of health appointments - I came away feeling quite satisfied - Dr congratulated me on how long and how well I had cared for Bill albeit maybe a little longer than I should have - always nice to get a little praise and recognition - got answers to questions I've been pondering over ... and the thyroid medication is working. Can I complete the trifecta tomorrow?

 

27forParkinsons: Day 14 (Thursday)

SLEEP AND PARKINSON'S (con't) 

Restless Leg Syndrome (RLS) This occurs in the general population but is reported in approximately 20% of those living with Parkinson's and involves uncomfortable sensations and the urge to move one's legs particularly overnight. RLS can be treated with Parkinson's medications. Investigations for iron or femitin deficiency are recommended. * Bill rubbed his right foot on his left ankle so much he caused a skin tear which turned into an ulcer - it was this ulcer we were on our way to have dressed when he had the fall outside that put him in hospital and then into care.

Sleep Apnoea Sleep apnoea has been observed in 20-40% of people with Parkinson's referred to a sleep clinic. This condition features loud snoring or gasping with resulting sleep disturbances and daytime fatigue for both sleep partners. Discussion with your treating medical specialist and assessment at a sleep clinic is recommended. Treatment may be the use of continuous positive airway pressure (C-PAP) machine

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