27forParkinsons: Day 27 (Wednesday)

WOW - that 27 days went quickly ...

Gratitude:

Thank you to all who have followed my posts for the past 4 weeks, liked or commented on them and donated to Parkinson's Aust - my target was $250 and I've been overwhelmed with the generosity of friends and family, the total I raised is $885 (if you would still like to

donate you can do so for the next couple of weeks via the link I posted).

Doing this challenge taught me a lot, raised questions in my mind-the what-ifs, should I have, could I have, why did I, why didn't I - it raised some happy memories, some sad ones, I've smiled, I've cried and hopefully I've raised awareness of Parkinson's and in particular Lewy Body Disease.

I'm so grateful to have such wonderful family and friends ... thank you one and all

2Mezza J Oneill and Sue van der Heide

 27forParkinsons: Day 26 (Tuesday)

Caring for someone you love 24/7 often 'just happens' - often it's a gradual process - sometimes it's not - like most things in life, the experience for each person can be so different, yet similar.

Caring can be complex

Caring can be rewarding

Caring can be demanding

Caring can be tiring - try exhausting

Carers need care too

Carers need respite (a few minutes, few hours, few days, few weeks)

Carers need support

We all need love

Recently I've been asked how I cared for Bill for so long - I'll admit there were times it was difficult but I'd do it again in a heartbeat if I could have him back ... so I thought today I'd share a few tips that were given to me that I found useful -

Spend quality time - use the 3 P's

Pleasure - you both enjoy the time

Participation - you both get involved as much as possible

Presence - you show you want to be with the person

Any simple activity can be a positive experience

Past hobbies and skills can be a good starting point (mmm the jigsaw puzzle idea didn't work too well for me)!

Activities don't have to be long - they may only last 5 minutes (depending on your loved ones attention span)

Technology can be great - Facetime calls with family/friends - especially during lockdowns!

Keep in mind also ... DOING NOTHING TOGETHER CAN ACTUALLY BE DOING SOMETHING

Activity is still worthwhile even if its soon forgotten

Simple experiences you can share:

Go for a drive

Eat an icecream

Go out for coffee

Reminisce - look at photos

Prepare dinner

Bake biscuits

Listen to music

Visit an art gallery

Fold the washing

Watch TV (even if it has to be sport sport sport)

Seek support and help - it's out there to be used

My Age Care can benefit both of you immensely and help keep a loved one at home longer (it is a good idea to set the wheels in motion early as it can be 18mths before package approval)

MAC can provide home care services, cleaning, lawns, garden, meal preparation, respite care (short term), shopping, equipment and aids.

Bill balked a little at the thought of having 'strange' women coming into our home to sit with him whilst I took time out, however, he soon looked forward to their visits - especially the drives Fiona took him on.

Carer Support Groups - companionship, support, trips and outings I've so enjoyed my time with LCHS Sale Carer group - Puffing Billy trip was something Bill really enjoyed and he never seemed to forget Corina and her 'poo talk' (every trip has to have an educational component)

Friends and family - if they offer their time to sit with or take out your loved one - take them up on the offer.

Dementia Australila - website

Carer Gateway - website

Parkinson's Australia - website

Weather warming up (for how long??) Tuesdays I meet up with a group of friends for Hydro Therapy exercise (and chatting) - looking forward to next week when the cafe opens up again and we can stay for lunch (best hot chips and gravy in Sale).

PURE GENIUS - ANNEMEKE MEIN

 27forParkinsons: Day 25 (Monday)

Communication and Connection

Communication is essential for maintaining our identity and connecting us to others. The content of your everyday exchanges may be relatively unimportant. What counts is its role in connecting us together

Language skills and vocabulary can diminish as dementia or illnesses progress, however the desire to communicate does not. People continue to want to understand and be understood. You can keep the communication going even when it feels one-sided.

The person with dementia may forget details of recent events, or the event itself. This is not an indication of indifference or lack of significance, it is simply one of the major impacts of dementia.

Good communication tips:

Talk to the person, not the carer, family member or friend

Greet the person with a smile and get their attention

Make eye contact and use body language.

Speak clearly

Express one idea at a time - provide information in small chunks

Use simple direct questions

Don't offer too many choices

Remove distractions

Be patient, don't rush, allow the person time to find the right answer

Don't prejudge the person's level of understanding

Don't take the person literally

Use humour

Use clear and simple language

Don't argue or confront

Respect the person's dignity

As I've said previously it's not always easy to follow the guidelines/hints/suggestions put forward by the experts - just don't beat yourself up if you slip up ... I know I was guilty of talking for Bill on many many occasions (maybe if I'd known then what I know now it may have been different), patience would run out at times (when you're existing on 3hrs sleep). Also, remember it's sometimes difficult to establish fact from fiction.

Whenever I go to the Gallery I always take another look at the amazing intriguing stunning work of Annemeike Mein ... here's a few pics of the current display .... to really appreciate the work you need to click on each photo ... truly amazing

THE ARCHIES - ARCHIBALD PRIZE

 

27forParkinson's: Day 24 

When things change: (from Dementia Aus)

The person with dementia may have forgotten about some of your shared interests and memories, but they are still the same person 

Try to focus on the person they are now and respect what they are dealing with.

Connection with others is still important to them.

You can help them maintain a sense of identity and worth. 

How you behave towards a person can be a powerful reminder to the person of their role in your life and the value of that role to you. 

While your interactions with the person with dementia may change over time, you can still enjoy common interests in different ways. Simply being with the person with dementia can be comforting for both of you. Over time, the person with dementia may need more reassuring human contact. Hold their hands, link arms or offer a hug.

 I think this year I spent more time watching TV and in particular football and racing than ever (it had to be sport as he was unable to comprehend or his attention span was limited) with most other shows) - to be honest, neither of us was really watching most of the time, Bill would nod off and I'd play games or surf the internet on my ipad - he just needed the security of knowing I was there.

Went to the Archibald Prize Exhibition with Elaine and H today ... some amazing portraits there, so many different styles and mediums, well worth a visit if you get the opportunity. (I'm sure Bill would have really enjoyed it) Pleasant late lunch at The Dock overlooking the Port of Sale. After Elaine went home I got the pruning shears out and attacked the daisies out the back ... hard work for my shoulders, think I might pay for it tomorrow ... next week I'll attack the ones under the kitchen window. Just a few of my favourites today ...

 27forParkinson's: Day 23 (Saturday)

Continuing on with Support

(thanks to Dementia Australia)

If your friend or a family member has been diagnosed with dementia, you may feel shock, anger or denial.

For many people, it can also come as a relief as they 'suspected something was wrong.

It's important to remember that the person with dementia (or Parkinson's) is bound to have plenty of powerful feelings too.

They may experience:

loss

sadness

confusion

anxiety

embarrassment

fear

frustration

anger

paranoia

It's important to be there for the person with dementia and maintain a good relationship with them.

At times, your connection may be put to the test. It's important to stay connected, support each other and talk about how dementia/parkinson's is impacting the way you feel.

Putting yourself in their shoes and making peace with the new chapter of your relationship can help.

Our relationship was often put to the test and I know I don't stand alone here, speaking with others who have loved ones with dementia, they have said they feel the same. No matter how hard you try, how much you love someone, there are always going to be those 'down days', days when you're tired through lack of sleep, your own health.

Personally, I found great support through LCHS Carer Support Group. I only managed to make one of the LCHS Dementia Support Group meetings and thankfully I did as it was at this

meeting I met Mel F a local Dementia Aus support worker ... I didn't think then that I would need her support quite so soon. I can't thank Mel enough - and urge you, even if it's only a question which you may think is silly or irrelevant or someone removed from your situation - reach out to Dementia Australia, their website has a wealth of information and they will put you in touch with a local support worker.

My mood today matched the weather, cold and wet - a lovely message from my 'bestie' set me off crying .... but thanks for the lovely sentiments and no I'm not special I just loved him so much .... computer decided to disconnect itself from the internet whilst I was transferring photos from my phone ... sorted it out eventually.

SPRING AT LAST - WELL AT LEAST FOR TODAY!

 

27forParkinsons: Day 22 (Friday) 

SUPPORT .... (taken from Dementia Australia booklet) 

These principles could apply to most serious long-term illnesses.

Family and friends really matter.

They help us all navigate life's ups and downs. 

They accept us as we are.

If a family member or friend has been diagnosed with an illness - it's natural to feel unsure about what this means for the future.

• You play an essential role in their lives.
• You support them on their journey 
• You listen without judgment 
• You respect them and accept them as they are 
• You provide a link to their past and their future 

While dementia may cause some things to change over time, important elements of the relationship can still remain.

One thing that doesn't change is their need to be a valued member of a family or circle of friends. 

In fact, this may be the time they need you - as their family or friend - the most 

Instead of focusing on what the person can't do, it can help to focus on the things you can still enjoy together

Over the past 2 years, maybe longer, I thought Bill was becoming unsociable, I now know this was just another part of his illness that was never explained to us. Not long before Bill went into care, I watched one day as Rob continued a conversation with Bill even though Bill kept nodding off every few minutes, Heather never came round without finding Bill even if just to say Hello to - Bill was aware of that as he commented on how H always included him, most of our friends were the same, me well I just got used to having one-way conversations - just a sign of complete togetherness! I believe the dementia part of Bills illness was what he found the hardest to cope with - especially the last few months when he'd struggle to find words or his thought process and speech froze.

 Yesterday (Friday) I went back to Physio/Gym after seven weeks .. not even a little sore today - wore my Parkinson's Tshirt to promote the cause .... home for a quick change ... appointment at the bank - had to make a 'libran' decision (does taking Bills name of our bank account seem callous or is it just common sense, is it better to feel the pain now or have continued pain) - thanks Kaz (Westpac Sale) for your guidance and assistance. Then I was off to Maffra to have lunch with Marlene ... so lovely sitting outdoors enjoying a beautiful sunny spring day at The Coffee Bean - I recommend the Thai Beef salad.

BEAUTIFUL DAY FOR A TRIP TO BAIRNSDALE

 27forParkinsons: Day 21

Walking, freezing, falls (cont)

Useful tips - ways to avoid Freezing episodes include:

Always take your medications on time

Walking to a rhythm (listening to a beat or music can help)

Avoid distractions when you're walking, just focus on long steps

Ways to overcome an episode of freezing include:

Prompt yourself by saying aloud 'left, right, left, right' or one, two, one, two'

Stand still and start swinging your arms

Start shifting your weight from foot to foot

Visualise an imaginary line to step over

FALLING:

Walking problems can make people living with Parkinson's more likely to fall. Some of the more common causes of falling for people living with Parkinson's include:

Freezing

Short and shuffling steps

Tendency to lean forward

Reduced blood pressure (Bill experienced blood pressure spikes -highs and lows)

Environmental hazards

Each of these problems can interfere with a person's balance, resulting in a fall

Falls are more likely to happen and cause serious injury in the later stages of Parkinson's. Be aware that falls can occur at any stage of Parkinson's.

Falling is particularly hazardous because of the risk of serious injury. Falls are a common cause of hospital admission for people living with Parkinson's. Whilst minor cuts and bruises are common, more serious injuries can occur and make the challenge of living with Parkinsons more difficult.

It is a good idea to report falls with your GP and/or specialist - particularly if falls are becoming more frequent. Adjusting medications can be helpful in some situations.

A good idea is to keep a journal/note book/diary specifically for recording falls, blood pressure changes, medication changes etc as sometimes dates and times are hard to remember.

Useful tips - to lower risk of falling

Always take medications on time

Undertake regular exercise to help with balance and leg strength

Walk to a rhythm - listening to a beat or music can help

Focus on long steps when walking

Remove hazards in your home, such as mats, rugs or furniture that blocks walkways.

Trip to Bairnsdale today with Noelene ... coffee, food, op shops, iced coffee, food, antique shops and Bunnings ... great day - very enjoyable. And so proud of myself - I managed to fit new hose fittings to the garden hose myself .... never had to do so before .. new skills I'm learning.

 

27forParkinson's: Day 20 (Wednesday)  

Today I want to cover a little more about WALKING FREEZING AND FALLING as this was a huge problem for Bill in his last weeks.

The dopamine in your brain is heavily involved in controlling the movement of your body in Parkinson's, there are reduced levels of dopamine.

For this reason, the most obvious changes related to Parkinson's are normally those that affect your movement, including walking, falling and freezing. In particular, slowed movement, stiff muscles and changes to posture affect all people living with Parkinson's.

The most common changes to walking include: 

Slowed movement

Freezing

Small and/or shuffling steps 

SLOWED MOVEMENT

Little or no swinging of one or both arms Tendency to lean forward It is also common for people living with Parkinson's to become easily tired during walking, even after short distances. 

These changes are likely to become more prominent as Parkinson's progresses.

However, the way these symptoms appear will be different for everyone.

Changes to walking can also be related to the medication cycle.

For example, walking can change as a result of the 'on/off' cycles of Parkinson's medications.

(not applicable to Bill - he took Kinson 3 times a day). Regularly reviewing medications with your GP or specialist can help you to manage changes to your walking.

Physiotherapists are considered to be the experts in helping with problems related to walking and can provide a personalised assessment and treatment program.

FREEZING 

Freezing is another problem that can affect people living with Parkinson's, particularly those who have had Parkinson's for some time.

Freezing is when a person stops suddenly whilst trying to move and the movement becomes frozen. It feels like your feet have been glued to the ground.

Freezing occurs in specific situations such as when starting to walk when stepping through a doorway, when attempting to turn a corner or when approaching a chair. 

It is normally only temporary and once past that position the person can often start walking freely again. 

Although it is only temporary freezing can be hazardous due to the increased possibility of falling. (and this happened quite regularly with Bill in his last weeks, sometimes the staff were able to lower him to the floor before he actually fell)

Freezing doesn't only happen during walking. People living with Parkinson's also report episodes of freezing during other repetitive activities such as brushing their teeth or writing.

Freezing can also occur to your speech when you're attempting to talk to someone. 

Went to Rosedale today for a massage by one of my friends, whom I met through Carers Group, can't remember having a massage since we moved back to Victoria in 2015!!! OMG was I tense in so many spots - one of the deepest and best massages I've had. Need to go back again next week for some more work. Thanks Jan.

Made an error which could have cost me my life and that of others - coming out of Jan’s I forgot she was on the divided highway and started to drive down the wrong way - luckily for me I think Bill was watching over me and I realised almost immediately and had plenty of room to do a Uturn … won’t make that mistake again, but it does show how easily it can be done, particularly when the vegetation in the centre between the two carriage ways is so dense you cannot see the other side.

LOST OR MISPLACED ?

27forParkinson's: Day 19

DIAGNOSIS OF PARKINSON'S (CON'T)

Strategies for Coping with a Diagnosis

Disclosing the diagnosis

The timing of disclosing the diagnosis is a personal choice.  However, attempting to hide the symptoms

and the diagnosis can be stressful which in turn may result in increased symptoms such as tremor.

Honesty and disclosure often brings relief as others may have suspected that something was amiss and

may have made a wrong assumption

Maintain or start an exercise program

Research now suggests that exercise plays an important part in slowing down the progression of

Parkinson's.  It is vital that exercise is commenced or continued.  Any for of exercise is recommended.

Including yoga, boxing, walking and Tai Chi

Adjusting to the changes

It will become necessary to allow more time for routine activities as bradykinesia can be frustrating.  

Having a realistic self-expectation will come with time, acceptance and adjustment

Maintaining self-identity

Try to avoid defining yourself by Parkinson's.  

It is important not to lose focus of yourself and your life roles rather than allow Parkinson's to dominate

everything.

Seek Support

The support of family and friends is invaluable and professional support may also be required.

Many people will seek the help of a counsellor to help them cope at this time.

Just as the symptoms of Parkinson's vary from person to person it is recognised that each person 

reach the point of seeking assistance at a different stage.

Seminars for the newly diagnosed are organised at a state level by Parkinson's associations.

Took myself off to get my nails re-done (thanks Rob, Shell & Lill) - amazing how this can lift

ones spirits.

Had money to bank so bit the bullet and took in 'the item I received in the mail' yesterday - I just

can't say those two words yet - have appointment for Friday morning as I needed to take copy of

Will in with me .... told her I wasn't sure if I knew where it was as I couldn't find it when I looked

recently - but there it was tucked away in the safe.

Thought I might go to view the Junior Archibald display at the Complex after hydro today, might

even take myself off to Bunnings ... have $70 of Bunnings gift cards somewhere - not where I keep

gift vouchers and cards ... I guess they'll turn up one day(one can hope).

Was a little  disappointed at the Junior Archie Display - expected more and to see original paintings not just printed copies.

I HATE MONDAYS ...

 

27forParkinsons:Day 18 

Diagnosis of Parkinson's con't

Diagnostic Investigations

Magnetic resonance imaging (MRI) will be carried out to rule out other neurological conditions which may resemble Parkinson's.

Computerised tomography (CT) does not reveal any Parkinson's related changes but will rule out structural abnormalities which may result in Parkinson's like symptoms. 

Functional neuroimaging (SPECT and PET) are used overseas in research-based projects and are now used more often in clinical practice in Australia to assist with diagnosis.

Levodopa Response 

An improvement in symptoms following the introduction of levodopa or a dopamine agonist is regarded as a positive indication that a correct diagnosis has been made. However, up to 50% of people with Atypical Parkinsonism may initially show a positive response which will not be maintained in the long term 

Impact of Diagnosis

Reactions to the diagnosis will vary greatly from anger to disbelief and it is recommended that support and education are sought. The emotional impact of receiving the diagnosis is much greater than the physical limitation of the condition at this stage. Having a partner or family member diagnosed with Parkinson's will also impact on loved ones. This will result in their own emotions as they come to terms with the diagnosis and the future.

 For us receiving the diagnosis was almost a relief - finally 'all the dots were joined and we had answers - unfortunately, and this may be due to the restrictions of Covid we received no information or education on what lay ahead of us. It is only now through this challenge I'm understanding ... Dull grey day again - seemed to match how I was feeling all day - Mondays just don't bring me any pleasant mail ... did manage to sell my Kogan smartwatch on Buy Swap and Sell and possibly made a new friend ... now I just need to get organised and sort out the 'stuff' in the garage ..

PLEASANT TRIP TO TRARALGON ..

 27forParkinson's: Day 17

Diagnosis of Parkinson's 

The onset of Parkinson's symptoms is gradual and obtaining a firm medical diagnosis can take some time in spite of the obvious nature of many of the symptoms.

Currently, there is no definitive laboratory test or radiological procedure which diagnosis  Parkinson's and autopsy-based studies have shown that even among neurologists, diagnostic accuracy results in up to 25% of cases proven incorrect at time of death.

In spite of advances in the management of Parkinson's, the provisional medical diagnosis continues to be based on the clinical picture of four cardinal symptoms and a positive response to levodopa (medication). The diagnostic checklist is composed of:

Bradykinesia 

Muscle rigidity 

Tremor

 Postural instability

 Specialised Medical Diagnosis and Management

Most people will visit their GP as they become aware of the development of symptoms and it is recommended that a referral to a neurologist or geriatrician be obtained.

Parkinson's organisations in each state can supply a list of locally-based specialists who have an interest in treating Parkinson's.

Some states have government-funded Parkinson's clinics. 

The basis of diagnosis is the assessment of presenting symptoms, past medical history, including exposure to substances (both pharmaceutical and environment ) and a review of family history.

 A neurological examination will reveal bradykinesia, tremor, rigidity and balance issues 

 Bill was referred to a physician/geriatrician early last year as we were concerned with problems with his memory - he'd had difficulty understanding tennis and cricket scoring and as he was a sports 'nut' this was so out of character - this and most of the other problems he was encountering were previously put down to the intensive radiation he'd received in the past. 

Covid and lockdown meant a wait of four months before we could obtain a face-to-face appointment. 

At this appointment, the testing consisted of the cognitive test (usually done annually after age 75), sign his name, and a walking test ... we were not prepared for the diagnosis of Parkinson's with dementia - was reasonably certain there was dementia.

I have wondered, since doing this challenge and researching, what may have been different if we had been aware of the Parkinson's symptoms back then - my hope is that by sharing this knowledge it may help someone, even just one other person to get an earlier diagnosis. 

Nicer weather today, H & I made the trip to Traralgon to Kmart to return clothing I'd ordered for Bill but arrived too late - thanks Kmart for making the returns so easy. Thanks H.

Rang Marg to see hows she's fairing

Emailed Sale Cemetery for details - need to 'get my ducks in a row' as H said, so when the borders are open we can organise a Rememberance Ceremony ... 

WILD WINDY SATURDAY - 16 OCTOBER 2021

27FORPARKINSON'S: Day 16 

SLEEP AND PARKINSON'S (CONT 

Vivid Dreams and Nightmares

These may occur frequently and may be increased by the medications used in the management of Parkinson's. 

If the nightmares are disturbing the treating medical specialist may adjust the timing or dose of the medications. Less commonly, nightmares may be carried over into the wakening period and may be described as parasomal hallucinations. In addition to nighttime sleep disturbances, other changes may occur.

These include: 

*Daytime Fatigue

 is a disabling, poorly understood and under-diagnosed symptom of Parkinson's which may precede the motor symptoms. 

There is no correlation between the severity of fatigue and the progression of the condition.

If depression is present and treated the associated fatigue may improve.

There is little else known in the area of fatigue.

*Excessive daytime sleepiness (EDS) 

Approximately 50% of people with Parkinson's experience EDS.

This may be related to the use of dopamine agonists in the management of Parkinson's therefore monitory and reviewing medications is vital.

As Parkinson's progresses periods of daytime sleepiness are extended and this is thought to be due to changes in the mid brain.

EDS is associated with more advanced Parkinson's.

*Sleep attacks.

Sudden onset sleep has been described as occurring while eating or driving.

All Parkinson's medications can be responsible but the dopamine agonist family are the most common cause.

It is essential that any sleep attacks are reported to the treating medical specialist.

Productive day finished all the surveys in my in-box - like seeing the $'s mounting up

Watched the Womens Big Bash between Renegades and Hurricanes ... Reds won 

Terrible weather day again so cold and very very windy - few more branches broken on the shrubs

down the driveway.

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

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

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