OF SPECIFIC INTEREST

There are many reasons that you might find yourself, as a spouse or carer, with your Person with Parkinson's in hospital.  It might be for a medication review and be about PD itself or via emergency after a fall or accident.  Falls, constipation and chest infections are the most likely PD related medical problems that might lead to hospitalisation.   However, it is more likely to be about a totally  unrelated problem for 'normal' problems like a knee replacement or any number of other medical problems we all might have, especially as we get older.  When this happens, we might find that the fact that our loved one has Parkinson's Disease becomes a bit lost within the system.  It is then that we need to become advocates - our loved one might not be able to do this for themselves or even realise that there is a problem.

Medications not arriving on time is often a problem - if this happens it is not just a problem for the patient but also the staff, as the effects of late medications can interfere with the nursing, and staff will have a slower, stiffer patient to deal with - more likely to have a fall, impossible to manage to position for xrays or other procedures etc.

Staff seldom know that the intake of protein with PD medications can reduce the effectiveness of the medication dramatically.

Staff often do not realise that the patient with PD might have difficulties pushing the call button;  need assistance overnight for turning in bed, for getting to the loo, for managing cramps.  Or that they might call out at night and have vivid dreams.  The list goes on ...... 

Here are a few links to websites to read with regard to being an advocate in a hospital setting.  They outline what to watch for and how to manage the situation.  Remember, a carer will often know more about Parkinson's Disease than many nursing staff as it is impossible for staff to know everything about every issue they might be faced with professionally.

APART FROM THE LINKS BELOW, SCROLL FURTHER DOWN TO THE NEXT SECTION ABOUT RYAN'S RULE.  THIS IS USEFUL FOR ALL OF US TO KNOW ABOUT IN ANY HOSPITAL SITUATION.

https://www.nextavenue.org/how-to-advocate-for-loved-one-with-parkinsons/

https://www.parkinsonsnsw.org.au/speak-up-for-yourself/

https://www.parkinson.org/resources-support/hospital-safety-guide

(This last link is not an Australian based resource but Parkinson's Qld has a similar item called a Grab Bag for $25). 

There are always questions about how Parkinson's will interfere with everyday life and for many people it is the non-motor symptoms that are the hardest to cope with.  However, many of these are treatable or can be managed well as long as your doctor or specialist KNOWS about them.  So, if something is bothering you, let your medical team know so it can be checked out - it might be something else that needs to be addressed with regard to your health; it might be that a medication has side effects for you; it might be something that can be managed in some way.  BE YOUR OWN ADVOCATE; GO PREPARED WITH A LIST TO YOUR DOCTOR!

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

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

'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 - 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

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/

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 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

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