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Parkinsons and Dopamine Agonists, a story !

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Introduction and Excuse me!

Pardon me, while I get this social media enterprise working. It has taken me 12 months to get this far with this editorial labyrinth. My former pre Parkinson’s self would have had this whipped up in a week or two, reality changes ability, however I won’t let it kill...

They Call me Shuffles

    A diagnosis with Parkinson's changes a lot of things: Motor function, non-motor functions, but maybe even more powerful is the changes in social interactions. I personally don't mind being called "Shuffles" now, I did at first (8 or so years ago I think), I...

The words of someone who has been to hell and back and still climbing out of it. 

“Agonists are like your best friend acting nice, but in the bigger picture they have an ulterior motive far more sinister than any benefit that the friendship could ever provide.

For most it works, but my experience was stomach churningly horrendous, with life long repercussions of the highest order, loss of business, reputation, family houses, economic and social supports.

Structured social  and medical supports, as well as patient suitability given patient personality and lifestyle,  are required that extend way beyond what the medical profession currently offers .

These supports need to look for and continually monitor for the hidden signals, behaviour changes, reclusiveness, adverse risk taking, clouded judgement,  as the participant can very easily deliberately hide the obvious signs of compulsive behaviour, which may seem trivial to those looking in, but will rock the foundations for the person who sought the benefit, ripping their insides with decay and leaving a shell of a human with nothing left inside.”

There is a moral duty of care that isn’t being acknowledged, and those affected are too proud to publicly admit that they fell prey to the fiery forks of the devil disguised.

 This could never happen to me, I won’t be judged by my friends so I’ll keep it to myself”

Featured Posts on Parkinsons

I’m terribly sorry, I do not mean to shock anyone, but right now, I see a person who is heading the same way I did, and I am beside myelf that I am unable to help, I am doing my best to be subtle, I am so so worried nothing is being done to help !

If you think you know someone, who may be affected, please read on: Further links below.

Please read this post, originally posted on the Parkinsons UK Website

 

In the mean time, I am working to raise awareness to perhaps better profile potential candidates and better monitor  those that are affected: In paticular, those that are single, autonomous, and answer to no one to themselves (like me), in regards to finances and life journey critical decisions.

Delusions, Hallucinations, Parkinsons and the medication.

Parkinsons UK:

What we do

We’re here for life beyond diagnosis.

We’re on a mission to change attitudes, support one another and find a cure.

We’re your charity, and together we’re bringing forward the day when no one fears Parkinson’s.

https://www.parkinsons.org.uk/information-and-support/hallucinations-and-delusions-side-effect

Hallucinations and delusions

Some people with Parkinson’s may experience hallucinations or delusions. They usually happen as a side effect of your Parkinson’s medication. But in some cases they may be a symptom of your Parkinson’s, or another condition, such as dementia.

What are delusions?

Delusions are strongly held thoughts or beliefs that aren’t based on evidence. This can be one of the most difficult experiences to come to terms with, especially if you have delusions about your carer or someone close to you.

Delusions can include:

Paranoia
You may believe you’re the victim of a conspiracy, or that someone is trying to hurt or harm you.

Jealousy
You may feel jealous of someone you love or a close friend.

Extravagance
You may think you’ve got special powers. This could make you act in an unusual or dangerous way.

Will I experience hallucinations and delusions?

Hallucinations and delusions can affect both younger and older people in the earlier stages of the condition, but are more common in people who’ve had Parkinson’s for a long time.

Hallucinations can affect all of your senses. A hallucination is when you see, hear, feel, smell or even taste something that isn’t actually real. 

There are different types of hallucinations:

Auditory hallucinations – hearing things
You may hear sounds or voices that other people cannot hear, such as music or people talking. Or, you could be convinced you’ve heard a familiar sound, such as a door opening or a doorbell ringing.

Tactile hallucinations – sensing things
This is when you think that someone or something is touching you or the space around you, even when nobody is.

Hallucinating smells and tastes
You may be able to smell something, such as smoke, or taste something you haven’t eaten.

Visual hallucinations – seeing things
You may have hallucinations where you see people, particularly relatives, animals or even insects, that aren’t there. 

If you’ve had a visual hallucination, it is likely that you will be able to describe what you have seen in detail. The images may go away quickly or be remembered for a long time.

Illusions
These are a different type of hallucination. If you experience an illusion, you will see real things in a different way from how they look in real life. For example, patterns on carpets and wallpapers may seem like they are moving, or a coat hanging on a door may look like a person.
 

How can hallucinations affect me?

Hallucinations can be quite frightening, especially when you don’t realise that the things you see, hear or feel aren’t actually real. Some people will be aware that they are hallucinating, and some won’t be. 

How hallucinations affect you will depend on how bad your experiences are and how other people around you respond. 

Hallucinations may also affect you more if you have dementia or memory problems.

Some people find their own ways of dealing with their hallucinations, but if you are finding it hard to cope, there are things that can be done to help (see the section What can you do to manage hallucinations and delusions).

Older people are more likely to experience urinary or chest infections, which can cause hallucinations. If you are an older person with Parkinson’s it is important to be aware of this and get medical advice as soon as possible.

delusions?

Why do some people with Parkinson’s experience hallucinations and delusions?

There are many reasons why someone with Parkinson’s may experience hallucinations and delusions.

Parkinson’s medication

Hallucinations and delusions may be a side effect of Parkinson’s medication. But not everyone who takes Parkinson’s drugs will experience them. It depends on the exact type of medication, the dose and the person taking them. Sometimes, the higher the dose of medication, the more chance there is of experiencing hallucinations.

In particular, some people with Parkinson’s can experience hallucinations or delusions when they have an ‘off’ period. This happens when your medication wears off before your next dose.

If you think your hallucinations are linked to your Parkinson’s medication, speak to your GP, specialist or Parkinson’s nurse as soon as possible about adjusting your dose or changing medication. Your pharmacist will also be able to help you.

Memory problems and dementia

Research shows that hallucinations and delusions often happen when someone with Parkinson’s also has problems with memory, thinking problems or dementia.

If you experience hallucinations at an early stage of Parkinson’s, it could be a sign of another medical condition, such as dementia with Lewy bodies.

Eye problems

Eye problems are more common for people with Parkinson’s than those without the condition. Issues with eyesight can often be linked to hallucinations and delusions so speak to your specialist or Parkinson’s nurse to find out about the best way to manage any eye problems.

Bad lighting can also be a cause of hallucinations and delusions so make sure you can see clearly in your home to rule out this issue.

Depressionsleep problems or very severe Parkinson’s movement symptoms have also been linked to hallucinations and delusions.

What can you do to manage hallucinations and delusions?

If you experience hallucinations or delusions, you should see your specialist or Parkinson’s nurse as soon you can to find out how to reduce them and the distress they often cause.

You should also do this if you’ve had hallucinations or delusions before, and they are getting worse. 

Simple blood or urine tests may help to make sure that another problem, such as a fever resulting from a chest or bladder infection, is not causing your hallucinations or delusions.

Talk to your family

It can help them to understand how you are feeling and become more patient so they can help you to manage your hallucinations or delusions. If people around you can understand and support you, this can make you feel less worried.  

If you have carers at home, help them to understand the following:

  • What happens when you experience hallucinations or delusions?
  • When are they most likely to happen?
  • What makes them happen less often and less strongly?
  • How can your carers or family members make things easier for you?

Ask about medication

Because the hallucinations and delusions may be caused by Parkinson’s medication, your GP, specialist or Parkinson’s nurse may suggest some changes to your Parkinson’s treatment. They will aim to find the right medication for managing both your hallucinations or delusions and your other Parkinson’s symptoms. 

Your current dose may be reduced, or a certain type of medication may be gradually stopped to help improve these symptoms. If this doesn’t work, then your specialist may suggest that you take medication that can stop hallucinations or delusions from happening. 

Research shows that experiencing hallucinations or delusions can have a big effect on the quality of life of people with Parkinson’s. It can also be very upsetting to carers and can put stress on relationships. 

Sometimes carers and family members can find it hard to cope with hallucinations and delusions. So it is very important to get medical treatment for hallucinations and delusions, or to learn ways of dealing with them when they happen.

If you experience hallucinations and delusions, read more about how you can manage this symptom.

Substance Abuse, Recovery, and Parkinson’s with Karen Frank

Karen Frank

Karen Frank, a Davis Phinney Foundation Ambassador, was diagnosed with Parkinson’s at age 47. No stranger to overcoming adversity, Karen proudly maintains longstanding sobriety after overcoming drug and alcohol addiction many years ago. Her own recovery experience set her on a path to become a peer advisor to other medical professionals experiencing similar life challenges.

Karen now spends her time helping physicians and nurses who struggle with substance abuse. She is an active public speaker with the Missouri Physician Health Program and the Missouri State Medical Association, where she speaks to groups of physicians about overcoming trauma and adversity and recovering from substance abuse within the medical profession. Karen started New Directions Coaching, where she mentors physicians and nurses who battle addiction, alcoholism, and other disorders. More recently, she has begun coaching people with Parkinson’s to improve their lives as they navigate living with chronic illness. Karen also formed and leads a YOPD support group for the St. Louis Chapter of the American Parkinson’s Disease Association.

In this video, she shares with us her story about substance abuse, her Parkinson’s diagnosis, overcoming addiction, taking action, and living well with Parkinson’s. You can watch the video below.

Resources and Topics Discussed

  • Recovery from trauma, substance abuse, and/or addiction is a multi-step process. For Karen, this included phases of grief, self-reflection, acceptance, and forgiveness
  • After a Parkinson’s diagnosis, many people often wonder, Why me? A powerful way to reframe the diagnosis, Karen believes, is to say instead, “Okay, what’s next? We have to use our grief as a launching pad, but then we let it go – it’s in the past.  The grief becomes the energy that moves us forward to a compelling future”
  • Impulse Control Disorders (ICDs), including pathological gambling, hypersexuality, compulsive shopping, and compulsive eating, are common in people with Parkinson’s who also take dopamine agonists (DAs), drugs used to treat the symptoms of Parkinson’s
  • People living with Parkinson’s who have a history of substance abuse and addiction are more susceptible to developing ICDs if they take dopamine agonists for symptom control
  • Taking action is Karen’s key to living well with Parkinson’s.  “I pulled out of my depression and began the work of rebuilding my life.  I had the skills and tools, the depth of character, and the kiss of disaster, and I had always risen above. I had to figure out what I was going to do next, what mattered to me, how I would fill my days and my heart with things that really fed my soul.”  
  •  So, too, is allowing herself to feel and consciously work through all emotions that arise
  • When you connect with others in your community, you are often inspired to give back, both good ways to boost your own health and that of those around you
  • There are numerous professionals who can help you if you are struggling with substance abuse and/or impulse control, and the first step to getting help is admitting to yourself that you need it
  • Cognitive Behavior Therapy helped Karen manage the compulsive behavior, anxietyand stress that were side effects of some of her Parkinson’s medications

Hear More of Karen’s Advice and Stories in our YOPD Women Series

Karen, along with Gaynor Edwards, Kat Hill, Heather Kennedy, and Soania Mathur, is part of our YOPD Women Council, which meets every month to discuss the many unique ways Parkinson’s impacts YOPD women. To learn more and register for the series, click here.

#Parkinsons

Posted at Davis Phinney

#Shuffles

Davis Phinney - Parkinsons

Dopamine Agonists: A warning

Do you have a friend or loved one with Parkinsons?

Do you know why there is a tulip on this post ? (answer at end )

Has anything been brought to your attention about your friend or loved ones’ situation that is a little left of centre?

  • Repetitive behaviour
  • Unexplained risk-taking
  • Seamingly and increasing delusional and paranoid thoughts and comments

If you know someone who presents with one or more of the above, you NEED to read ALL of this post (before clicking on any link or picture)!I

Having Parkinson’s is one thing, some of the medications and their side effects is another!

Some of these medications, namely Dopamine Agonists, can and do ruin lives and families around the world. Family fortunes, formal and informal social structures can all be lost unnecessarily.It may be the medication, and there are alternatives!If you observe

:Mental illness causing severe suspiciousness (PARANOIA),

Compulsive and repetitive behaviourDelusionsGambling (this can take many forms, and not the obvious pokie machines, gambling can take the form of risk in business)

  • Adverse Risk-taking, and irrational decision making
  • Compulsive behaviour such as gambling, hypersexuality, shopping, eating, medication use and repetitive purposeless activities

Source:https://apps.medicines.org.au/product.cfm?type=cmi…

If your friend is in a position of risk, such as:

  • Your friend is in charge of all decision making
  • Your friend has control over their assets (or others) as the sole caretaker.
  • Your friend does not need to answer to anybody in relation to the above risk factors.
  • Your friend’s circle of influence is reducing in size and effect.

If they are taking a Dopamine Agonist to treat Parkinsons, such as:

  • Apomine® (apomorphine)
  • Movapo® (apomorphine)
  • Neupro® (rotigotine)
  • Sifrol® (pramipexole)

Then your friend may need help, and they probably won’t admit to it.

Please enquire and empathise. And ensure to your own satisfaction, that all has been done to follow up on this line of enquiry.

How do I know all this?

I also have Parkinson’s I also have been adversely affected.I was prescribed Sifrol for 4 years, the effects of which ruined my life as I knew it, losing about 1.5m in the process.

I have since recovered from this, and have new foundations, but I am making it my mission to get this message out there to assist others, one person in particular.

I am active in the Parkinsons Community, and now play a role in the online community.

I am about to launch a website to capture these horror stories worldwide and have them available as a resource in one place.

Am I qualified medically?

No, but I have a lived experience and have researched extensively. I can testify to my story. I have others that can also testify to their own.And I care, I truly care! My own neurologist has told me, people with Parkinsons are more likely to develop a psychosis taking Dopamine Agonists.

So what do you do?

1. Don’t blame your friend, it is the drugs, your friend needs help and guidance, not a lecture.

2. You can reach out to me, or contact the Parkinsons organisation of your state for further advice.

3. Join an online community group and ask questions.

https://www.facebook.com/groups/ANZPSC/

Simply talking to your friend will probably not be enough, you need to make sure their neurologist is aware of the symptoms.

Please act on or share this message: ignoring it is not an option!

But please, don’t take my word for it, here are some articles on the subject:

https://www.parkinsonsvic.org.au/…/impulsive-and…/https://parkinsonsnewstoday.com/dopamine-agonists/….https://wellcomecollection.org/articles/XeD-SREAAFdNtckt…

Good people acting Strangely

https://www.abc.net.au/…/ex-ceo-sean-peter…/12526834

Psychosis in Parkinsons (more general)https://www.youtube.com/watch?v=9KaIrLB1WvA

People affected, it is documented, may be embarrassed by the outcomes of their “artificial” behaviour, and will do whatever they can to hide and justify their behaviour! The term for this type of behaviour is officially called “Masking”

https://en.wikipedia.org/wiki/Masking_(personality)

Most often associated with autism, but not exclusively.

But it is not ‘the person’ that is causing this, it is most likely the drugs…..Please act on this if you know someone in this position:

  • 1. Acknowledge: Your hunch may be right
  • 2. Empathasise: Understand, the feelings and actions are not controllable.
  • 3. Evaluate: Your plan in helping, and the risks of not doing so.
  • 4. Communicate: With your friend and whoever is in your friends’ circle of influence.
  • 5. Monitor: It doesn’t go away with a simple chat, continue to measure impacts and reactions

Oh: Why the tulip ?

The red tulip doesn’t symbolize love (unlike the red rose) but is a symbol adopted by the Parkinson’s community worldwide to bring awareness to Parkinson’s disease (PD).

Even though the red tulip hadn’t been associated with Parkinson’s awareness since the early 1980’s, it wasn’t until April 11, 2005 that the red tulip, with a fringe of white, was set in motion as the official symbol of PD at the 9th World Parkinson’s disease Day Conference in Luxembourg.

The tulip is described in detail as the “exterior being a glowing cardinal red, small feathered white edge, the outer base whitish; the inside, a currant-red to turkey-red, broad feathered white edge, anthers pale yellow”.The new, red tulip was developed by a Dutch horticulturist and Parkinson’s disease patient by the name of J.W.S. Van der Wereld.

The tulip was named after Dr. James Parkinson, the doctor who discovered Parkinson’s disease, who originally named the disease the ‘shaking palsy’. Not only did the tulip receive the Award of Merit that year (1981) from the Royal Horticultural Society in England, but it also was presented with the Trial Garden Award from the Royal General Bulb Growers of Holland.

There are several different variations of the PD tulip symbol.The PDF (Parkinson’d Disease Foundation) specifically uses a yellow tulip to denote optimism and hope. The three petals are used to promote the ‘symbol’ of their three-pointed mission: “Hope through research, education and advocacy”.The tulip has been adopted as a symbol by many Parkinson’s organizations around the world and over the years. Similarly, the EPDA (European Parkinson’s Disease Association) chose the tulip as the symbol for its logo in 1996.A more modern red tulip with rounded leaves, recognized by many in the United States as the more recent representation of Parkinson’s disease, was designed by early-onset Parkinson’s patient Karen Painter

Source: http://parkinsonsjourney.com/a-red-tulip-for-parkinsons…/#Parkinsons#DopamineAgonists

Parkinsons, Odd behaviour and Medications

Do you have a friend or loved one with Parkinsons ?

You reckon that would be bad enough ?

Is their behaviour a bit (or a lot or even dangerously) out of character?

It may be the drugs they are taking and not their real self or the disease!Please read ALL of this post (not just the link) if this resonates:

There is a group of drugs called “Dopamine Agonists”, that have been documented as causing this behaviour with some people who take these drugs.

According to Parkinsons VIC:

“Research has shown that around 17% of people with Parkinson’s who take dopamine agonists experience impulsive and compulsive behaviour. “

Source: https://www.parkinsonsvic.org.au/…/impulsive-and…/

There are alternatives !

If you observe:

  • Mental illness causing severe suspiciousness (PARANOIA),
  • Compulsive and repetitive behaviour Delusions
  • Gambling (this can take many forms, and not the obvious pokie machines, gambling can take the form of risk in business)
  • Adverse Risk-taking, and irrational decision making
  • Compulsive behaviour such as gambling, hypersexuality, shopping, eating, medication use and repetitive purposeless activities
  • Shortness of breath or tightness in the chest
  • Shortness of breath, swelling of the feet or legs due to fluid build-up (heart failure).

Source: https://apps.medicines.org.au/product.cfm?type=cmi…

Your actions may save someone from ruin !What can you do ?Do NOT blame your friend, they do and will need your empathy and understanding, now and ongoing, it may be the drug, not them that may be affecting their behaviour.

Subtly fact find and enquire as to the drugs taken by your friend.

See if they are on the list below.Contact the Parkinsons authority of your state with your concernsEnsure their neurologist is alerted to the symptoms.

Join the Australian and New Zealand Parkinsons Support Group for peer discussions. (What’s said in the group, stays in the group)

https://www.facebook.com/groups/ANZPSC/

And/Or You can contact me if you feel comfortable in doing so (please do)

If you notice any of the above, ignoring this post is NOT an option !

  • Which Drugs are they in Australia?
  • Apomine® (apomorphine)
  • Movapo® (apomorphine)
  • Neupro® (rotigotine)
  • Sifrol® (pramipexole)

I am in the midst of setting up a website to capture (anonymously) all the horror stories of lives ruined world wide by this drug. Am I qualified to document this: No not medically, but from a lived and observed experience YES ! Hopefully, this message will get out to the people that can assist those silently hurting!

A Little Music

Some of the Author’s musical favourites from friends

Phone

0490 33 22 68

Email

shuffles@shufflenews.com

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