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.