• Home
  • About Us
  • Meetings
  • Newly Diagnosed
  • Choir
  • Dance
  • Exercise Options
  • Useful websites
  • Special Events
  • For Carers
  • Government Support
  • Travelling with PD
  • Travel Experiences
  • Local media coverage!
  • Personal Stories
  • Members’ Pastimes
  • Links chosen by members
  • Handy Hints from Members
  • Of Specific Interest
  • Contact Us
  • More
    • Home
    • About Us
    • Meetings
    • Newly Diagnosed
    • Choir
    • Dance
    • Exercise Options
    • Useful websites
    • Special Events
    • For Carers
    • Government Support
    • Travelling with PD
    • Travel Experiences
    • Local media coverage!
    • Personal Stories
    • Members’ Pastimes
    • Links chosen by members
    • Handy Hints from Members
    • Of Specific Interest
    • Contact Us

  • Home
  • About Us
  • Meetings
  • Newly Diagnosed
  • Choir
  • Dance
  • Exercise Options
  • Useful websites
  • Special Events
  • For Carers
  • Government Support
  • Travelling with PD
  • Travel Experiences
  • Local media coverage!
  • Personal Stories
  • Members’ Pastimes
  • Links chosen by members
  • Handy Hints from Members
  • Of Specific Interest
  • Contact Us

OF SPECIFIC INTEREST

There are often specific topics that People with Parkinson's discuss amongst themselves and, as a group, we try to gather information from reputable sources to inform those discussions.


This page is dedicated to just this.  It is not a page that gives opinions or instructs on what should be done.  It simply provides a wide range of useful reading you would find on an internet search but puts it together for you on one page.  


Please, if you find other useful articles, videos etc on the different topics we would love to hear about them.

what does it feel like to have parkinson's?

this must be a hard thing to explain considering the number of symptoms people can have!

I asked my husband to try to explain to me what it felt like to have PD and he said to me that when he is walking it feels like he is pushing through water in a swimming pool!  I have often asked others, but it is and must be, a hard thing to explain.  I have found this conference address by a man who has PD and it links together many of the little comments I have overheard PwP discussing.  I certainly think it is a worthwhile video to watch and listen to.  It is from Parkinson's UK.  Of course, how 'it' feels won't be the same for all but there will be overlap and maybe it will assist in discussions about  PD and how 'it' feels!

 I hope you find it illuminating - I did.  Carol C


https://www.youtube.com/watch?v=gATpqp7Cuso



Some things we don't think about often!

spacial awareness

looking after your teeth and pd

looking after your teeth and pd

We personally notice situations when a lack of Spacial Awareness, because of PD, becomes obvious.  Sometimes it is when the person with PD is reading a map and giving instructions from that map to a driver or a person with PD gets into a lift but does not think to move to the back and out of the way of others.  So many odd and often annoying examples are available.  Here are a couple of articles to read about the topic which might assist in avoiding some frustration caused by these situations.


https://www.healthline.com/health/spatial-awareness


https://parkinsonsdisease.net/living/spatial-awareness-issues?utm_confid=6982b1ce1757b72d547a207b26f4b8be9f40f87261f5dd1e6b4f7d5706ba7ea0&utm_term=Article_2_Button&vgo_ee=mMnlwji3ehr18nRIQ4owbLASGoZaGbrTaBAt0pcpde%2FF5SJnB%2BvPnii4Zju6kLs%3D%3ApRjkZXYAYSO87cbUs%2BB8j775gtcrVSPm

looking after your teeth and pd

looking after your teeth and pd

looking after your teeth and pd

 Seeing the dentist regularly for a cleaning and  check-up might not be at the top of your to-do list. You also may have,  understandably, postponed visits during the pandemic. But dental care is  important if you have Parkinson’s disease (PD). People with PD may be  more likely to experience oral or dental changes, and Parkinson’s can  bring challenges to caring for your teeth and visiting the dentist.  



https://www.parkinson.org/library/fact-sheets/dental-health


https://www.parkinsons.org.uk/information-and-support/mouth-and-dental-issues


https://www.parkinson.org/living-with-parkinsons/management/dental-health





MAYBE SOME STEPS FORWARD?

NEW DRUG FORMULATION TO HELP THOSE EXPERIENCING MOTOR FLUCTUATIONS ON ITS WAY!

NEW DRUG FORMULATION TO HELP THOSE EXPERIENCING MOTOR FLUCTUATIONS ON ITS WAY!

NEW DRUG FORMULATION TO HELP THOSE EXPERIENCING MOTOR FLUCTUATIONS ON ITS WAY!

Not sure how long this drug will take to work through the system to be approved, but it will provide an alternate method for medication absorption, which will be very helpful for those whose tablet form medication is no longer providing adequate control of symptoms.  Anyway, read about it here.

Posted 19/01/2023


https://shakeitup.org.au/new-parkinsons-drug-formulation-shows-positive-phase-iii-trial-results/?fbclid=IwAR3tvA5QGlwDJpiyX0DtaUC8E78kPx6xdg7xybYCYTtD6MIlBiBIGO6W3lE

new approach to stop the progression of pd

NEW DRUG FORMULATION TO HELP THOSE EXPERIENCING MOTOR FLUCTUATIONS ON ITS WAY!

NEW DRUG FORMULATION TO HELP THOSE EXPERIENCING MOTOR FLUCTUATIONS ON ITS WAY!

There is much excitement about this new approach to gene therapy which hopefully would stop the progression of the disease.  Once again, it has to be approved but 'Shake It Up Australia' and 'Michael J Fox Foundation' have committed well over a million dollars to advance its research.  Below you can see two news report about it and, in the last link, listen to an excellent interview with the researcher.

Posted 19/01/2023


https://shakeitup.org.au/new-gene-therapy-research-targeting-the-mitochondrial-function-could-halt-the-progression-of-parkinsons/


https://www.skynews.com.au/business/science/breakthrough-in-therapy-to-treat-parkinsons-disease/video/f971f1bc6c0898ccc59dce6fc3cf4fcf


https://www.abc.net.au/radionational/programs/breakfast/discovery-could-stop-parkinson-s-symptoms/101847434?fbclid=IwAR0qszOCT_9UAgo7Tzg8yF7xvVwV9twZ_o7FWbtsR8Nq4p1nv1CwkSneQXY&mibextid=Zxz2cZ

another approach for research

NEW DRUG FORMULATION TO HELP THOSE EXPERIENCING MOTOR FLUCTUATIONS ON ITS WAY!

another approach for research

There are many theories about what causes the cells in the brain to malfunction causing Parkinson's.  Here is a newer avenue for thought.

Posted 15/03/2023


https://www.uq.edu.au/news/article/2023/02/how-brain%E2%80%99s-recycling-system-breaks-down-parkinson%E2%80%99s-disease-0

to drive or not to drive

to become a non-driver is a very difficult decision at times

This decision is a hard one to make and will vary from person to person.  While having Parkinson's Disease is an issue to take into account, as we grow older,  we all need to make decisions with regard to our competence in driving - keeping both ourselves and others safe on the road!  Here are some informative sites.

  • https://www.healthlinkbc.ca/health-topics/zx3961
  • https://www.myparkinsonsteam.com/resources/driving-and-parkinsons
  • https://www.everydayhealth.com/senior-health/driving-safety.aspx
  • https://www.parkinsonsnsw.org.au/driving-and-parkinsons/
  • https://www.parkinsonsvic.org.au/parkinsons-and-you/driving/
  • https://www.michaeljfox.org/news/dexterity-driving
  • https://journals.lww.com/neurotodayonline/Fulltext/2018/10040/For_Your_Patients_Parkinson_s_Disease__To_Drive_or.8.aspx
  • https://shakeitup.org.au/driving-with-parkinsons/


From local knowledge of our Government Departments


https://acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:c924c0e1-2fc7-3d12-9dd9-83a3d32d28c3


identifying parkinson's

some of the latest information

'We have been researching from  media about Parkinson's Disease since the disease first entered our lives thirteen years ago so we thought a section about some of the latest articles etc about PD could be of interest (if not of use).  Often we read of breakthroughs and then hear nothing more. But one day it will come and perhaps the first thing to come will be a definitive test for Parkinson's Disease which will alleviate the problem of many PD sufferers wondering what is wrong with them for many years before being diagnosed.  Sometimes there are also incorrect diagnoses or someone has a couple of different problems that are hard to differentiate.  Here are a few of the latest ideas to be researched.'


Usual Diagnosis Procedures


  • https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/how-parkinson-disease-is-diagnosed


Some Ideas in the Pipeline


  • https://thechronicle.pressreader.com/article/281595244422780
  • https://www.facebook.com/watch/?ref=saved&v=5432436863502286


HALLUCINATIONS AND DELUSIONS

SOMETHING WE OFTEN AVOID TALKING ABOUT

'Hallucinations and delusions - that only happens to mad people!'  Well, that is what many think and perhaps that is why we don't tend to talk about this topic.  Experiencing hallucinations and delusions can be very worrying for both the Person with Parkinson's and the carer.  If experienced, the problem needs to be discussed to provide help.  Articles below give a good overview of the problem and what to do about it.


  • https://www.myparkinsonsteam.com/resources/how-to-recognize-hallucinations-and-delusions?utm_source=iterable&utm_medium=email
  • https://www.myparkinsonsteam.com/resources/how-to-manage-hallucinations-and-delusions?utm_source=iterable&utm_medium=email&utm_campaign=parkinsons_roc
  • https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Hallucinations-Delusions
  • https://www.parkinson.org/blog/research/Hallucinations-and-Delusions-in-Parkinsons-Disease

parkinson's medications

there's lots to get YOUR HEAD around!

Most people with Parkinson's Disease rely on medications to provide relief from the symptoms of the disease.  There is no magic pill or potion to cure the disease - all medications ONLY address symptoms and this is why, over time, the medications increase as the disease progresses and symptoms increase in number and/or intensity.  Here are a few sites to investigate the medications, how best to use them, how to manage situations while taking them ...  have a read and don't forget to question your GP, specialist and pharmacist about the medications you are using.


  • https://parkinsonsdisease.net/living-with-pd/medication-management
  • https://www.healthline.com/health/parkinsons/parkinson-medication#3-mao-b-inhibitors
  • https://www.parkinsonsdaily.com/most-common-parkinsons-medications/
  • http://www.ec-online.net/Knowledge/Articles/parkmeds.html
  • https://www.nps.org.au/professionals/anticholinergic-burden/consumers/how-a-medicines-review-in-your-home-can-help-you-get-the-most-from-your-medicines
  • https://davisphinneyfoundation.org/how-to-take-levodopa-for-parkinsons/

VISION AND PARKINSON'S

A LESSER-RECOGNISED, BUT CONCERNING, SYMPTOM OF PD!

Not every person with Parkinson's Disease will experience vision problems.  Many of us will have vision concerns simply due to the ageing process.  However, for some, there might be vision changes that are Parkinson's, or PD medication, related!  PD can affect any muscle in the body and the eyes have many, very important, small muscles.  Problems can vary from dry and scratchy eyes, hallucinations, blurred and double vision to eyelids not opening, not opening fully or drooping away from the eyeball.  There are some things that will help, and hopefully these articles might expand your knowledge so that you can feel more comfortable discussing any vision issues with your specialist, doctor or optician. 


  • https://www.apdaparkinson.org/article/eye-problems-parkinsons-disease/
  • https://shakeitup.org.au/vision-and-parkinsons/
  • https://davisphinneyfoundation.org/parkinsons-and-vision/
  • https://parkinsonsnewstoday.com/2021/04/26/double-vision-is-common-among-parkinsons-patients-large-study-finds/
  • https://www.parkinsonsdaily.com/parkinsons-and-eyelid-drooping/

covid, vaccinations and the person with parkinson's disease

there are often questions about this topic

COVID is a new area of concern for PwP and their loved ones.  While there has not been a lot of time for research there is certainly literature from reputable sites from which to glean information. Here are some of these sites.

  • https://www.parkinsonsnsw.org.au/coronavirus-and-parkinsons
  • https://www.webmd.com/lung/news/20201106/covid-19-linked-to-increased-risk-for-parkinsons
  • https://www.aarp.org/health/conditions-treatments/info-2021/parkinsons-made-worse-by-covid.html?fbclid=IwAR3DYm_AYaeF82ql-VlXppcp48-ifwJGlQv8G-PKaWUToE9ZA4wo7TKYOwg
  • https://parkinsonslife.eu/neurologists-covid-vaccines-parkinsons/?fbclid=IwAR2vfak0KdruSZBqI19vDuUbA4dl2qeFQgSkKYgIGLNLBPebOSaErj87k3Y

the dreaded constipation

What we would rather not talk about

Constipation is a symptom of Parkinson's Disease and, according to statistics, is one of the most likely symptoms to hospitalise its sufferer.  Like falls, avoidance is by far the best solution.  The following articles will explain and, perhaps assist, in that avoidance.

  • https://www.parkinsonsnsw.org.au/constipation-in-parkinsons/
  • https://www.webmd.com/parkinsons-disease/guide/parkinsons-constipation
  • https://www.michaeljfox.org/news/ask-md-constipation-and-parkinsons
  • https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/parkinsons-disease-and-constipation
  • https://www.firsteatright.com/worldwide-research--patents/the-golden-kiwifruit-its-benefit-laden-results-on-constipation

Toowoomba Parkinson's Support Group

Copyright © 2023 Toowoomba Parkinson's Support Group - All Rights Reserved.

Powered by GoDaddy Website Builder