April is Parkinson’s Awareness Month with World Parkinson’s Day recognised on 11 April each year.
Today in Australia, 37 people will hear the words ‘you have Parkinson’s’ for the very first time. That’s more than one person every hour, of every day.
Parkinson’s Awareness Month provides opportunities to learn more about the issues facing people living with Parkinson’s every day – and how their lives can be improved – particularly through exercise, social opportunities, and community activities.
Parkinson’s is a progressive, degenerative condition of the central nervous system. Its causes are unknown, and a cure has not yet been found.
Parkinson’s is more prevalent than many common cancers – including prostate, breast, colorectal, and lung cancers in Australians over the age of 50.
Parkinson’s is complex, misunderstood in some cases misdiagnosed.
Parkinson’s affects people of all ages. The reality is that 5 Australians under 40 are diagnosed every day.
Parkinson’s impacts more than a person’s movement and speech. In fact, this disease has more than 50 symptoms – many invisible. These are called non-motor symptoms because they are not related to movement.
Being unseen, non-motor symptoms are often misunderstood and hard to talk about. Yet they can have a greater effect on relationships, social life and overall quality of life than the more obvious symptoms of Parkinson’s.
Here we expose the myths and realities of Parkinson’s by exploring unseen symptoms and unspoken issues.
With close to 50 symptoms, the complexity of Parkinson’s is severely underestimated. The recognisable symptoms of Parkinson’s are just the tip of the iceberg. Beneath the surface there are many more than 20 non-motor symptoms ranging from nuisance to life threatening.
Along with constipation, people living with Parkinson’s can often find it hard to empty their bladder. This creates a risk of urinary tract infections.
If you find that you are getting up multiple times during the night to visit the toilet, it is most likely because you are retaining fluids during the day – which then move to the bladder when you lie down at night.
You may also notice that you don’t take as many Parkinson’s medications to get you through the night. When you are off your medications, your body will stiffen up. This in turn increases the risk of falls visiting the bathroom at night.
Ideally, you want to be increasing your fluid intake to reduce constipation – but you don’t want to be rushing to the toilet.
Wearing products such as pads can be really helpful for various reasons. They are discreet, made appropriately for different situations and they also great for your mental health. You will avoid embarrassing accidents, reduce anxiety and lessen the risk of falling during the night.
The Continence Foundation of Australia can recommend suppliers of these products which you can buy online with complete discretion.
- Do pelvis floor exercises. (Yes, men have a pelvic floor too!)
- Check out product suppliers on the Continence Foundation of Australia web site
- Manage toilet visits at night to reduce risk of falls.
- Try slightly elevating the head of the bed when sleeping to reduce the movement of fluids retained during the day to the bladder at night.
- Request a call from a Parkinson’s NSW Registered Nurse to have a confidential chat about some more solutions that could work for you.
Overall, your body slows down with Parkinson’s. That also means a slower movement through the whole gastro-intestinal tract.
Also, when we physically slow down we often think that we just need a sip of water instead of that glass of water with our medications.
This reduces your fluid intake which means waste products remain inside you for a longer period of time. The water you drink is absorbed and as a result it is common to become constipated.
Nausea can be a side effect when taking a new type of Parkinson’s medication. Nausea can lead to less fluid and food consumption which in turn leads to constipation.
Eating a good healthy diet and drinking plenty of water is will help. However, it should be water, no just tea and coffee. These drinks are diuretics and go straight through your bladder without doing any good.
For good health and wellbeing, you need to have bowel movements every day. Once a week is not good enough.
Once you take your Parkinson’s medications, they need to get into the top of the small intestine. This will allow them to be efficiently absorbed and deliver the best effect of the medications.
Because everything slows down with Parkinson’s, you will also experience slower gastric emptying (contents are in the stomach longer). So, if you are constipated, your medications won’t be getting to where they need to be.
No one wants to talk about constipation but it is really important to avoid and manage it – not just for comfort and overall wellbeing, but to maximise the effectiveness of your medications.
- Drink plenty of water
- Eat a good healthy diet (including fruit and vegetables for fibre content)
- Exercise regularly
- Maintain regular bowel habits
- Request a call from a Parkinson’s NSW Registered Nurse to have a confidential chat
Loss of dopamine cells in the brain due to Parkinson’s and the medications you take can affect your physical intimacy and sexual relations. Your body becomes slower and you may no longer have the neuro pathways that would normally drive intimacy.
Sexual health is also mental health; body image changes, you may not be able to do what you used to do, and yet you try to continue your intimacy routine by going to bed at night with our partner.
Generally, evenings are not the best time for intimacy because you are not ‘on’ your medications then.
So, when is your best time? When are you ‘on’ your Parkinson’s meds? You might need to think about changing your routine to that particular time if you want to be intimate with your partner.
There are often other changes to keep in mind, such as who initiates intimacy. This could involve a role reversal.
It can be challenging, but you will have to rethink aspects of your relationship and communicate openly with your partner. However, rethinking your timing can be a really easy solution.
Other solutions involve approaches you have not always used in the past – such as increasing foreplay, and using gels and creams. Change is not bad, it’s just different.
Dopaminergic drugs can also make you hypersexual – meaning you obsessively pursue sex or act out in sexual ways such as becoming obsessed with pornography, masturbation, exhibitionism, etc.
It is vital to talk to your doctor or neurologist if you are experiencing hypersexuality. It is most likely being triggered by one of your Parkinson’s medications and can have a massive impact of your life.
It can be hard to talk about intimacy with your partner or a health professional.
Having a chat to Parkinson’s NSW Registered Nurse on the Infoline is confidential and is a great way to find more information and receive suggestions.
Talking to a Parkinson’s-experienced counsellor is also very beneficial as you will be in a safe space with someone who understands the disease. In fact, the Parkinson’s NSW Infoline receives calls from other counsellors asking for advice about their Parkinson’s clients.
But above all, discussing matters with your partner and being open and honest is the best place to start. Don’t grieve about the end of intimacy; plan and make changes in partnership with your loved one.
- Communicate with your partner and discuss options.
- Change it up and try different things.
- Be honest and tell your doctor or neurologist as your medication might need to be adjusted.
- Request a call from a Parkinson’s NSW Registered Nurse to book a face to face or phone session with a Parkinson’s counsellor.
Swallowing and Communication
Many people living with Parkinson’s imagine that they have more saliva than other people. While it seems to be the case, this is not true. The reason: Because everything slows down with Parkinson’s you don’t swallow unconsciously as often.
There are more than 30 muscles involved with swallowing and they all have to work together – like a domino effect. Salvia contains enzymes that can create skin problems and pain from the build-up which is not relieved by swallowing.
You may think that it’s a problem if your voice has become softer, or you may believe there is nothing you can do to fix it.
However, a Parkinson’s NSW Registered Nurse can recommend exercises for your voice muscles which should be started straight after a diagnosis of Parkinson’s diagnosis – and then maintained.
You may not want to socially engage as your voice gets softer and you become frustrated when people ask: “What did you say?” or “Could you please speak up?”.
You may also tend to back away from social occasions where you have to eat in public because it’s embarrassing.
By exercising your voice, you can reduce swallowing problems and communication challenges, reconnect socially and generally enjoy a better quality of life.
You need to get on to your voice exercises ASAP and commit to them! Talking, singing and really projecting your voice when you use it are all very beneficial.
- Shout or be without – exercise your voice.
- “We will rock you!” – Turn up the radio and sing along to your favourite song.
- Modify food to make it easier to swallow or have smaller, regular meals.
- Join a choir or try some public speaking (maybe in church?)
- Check out LSVT Loud – a speech treatment program tailored for people living with Parkinson’s.
- Try laughing yoga.
- Search for a voice exercise software application online or on your smart phone.
- Request a call from a Parkinson’s NSW Registered Nurse to find an exercise solution for you.
Anxiety And Depression
People living with Parkinson’s may experience anxiety or depression due to the loss of dopamine cells in the brain, which causes a low mood.
It can also present a major challenge for partners who become carers – a change which often creeps up and changes the dynamics of the relationship.
It can be very confronting for partners/carers when a long-established division of labour within a partnership changes.
Prior to a diagnosis of Parkinson’s, partners have their specific roles – such as managing insurance and finances, home maintenance, tracking social engagements, etc.
Gradually, carers find themselves taking on additional responsibilities which were previously shared. This can be very hard.
Not completely taking over but overseeing new responsibilities without disrespecting the partnership can also be stressful while trying to avoid a major issue like losing money.
Many people who call into the Parkinson’s NSW Infoline to speak to a Parkinson’s nurse are often surprised that anxiety and depression can be a forerunner of Parkinson’s – and that the connection between the two had not been made in the past.
There is nothing wrong with being medicated to help anxiety and depression. However, you need to monitor what combination of medications you are taking to ensure that your Parkinson’s medications remain effective and are not being compromised.
Neurologist: “How are you going?”
Patient: “Great thanks!”
This happens so many times where people we are not truthful at their neurology appointments and don’t say what’s really going on.
They also often exclude their partner from speaking up on how we really are. It is most important to be really honest and give good, honest feedback at these appointments – saying what’s actually happening and getting it followed up.
If you are the carer and don’t want to bring it up because you don’t want to disrespect your partner, find another way to share – write your doctor or specialist a letter, call them up, or email them.
That will ensure the information is on the record so on the day of your partner’s next appointment the issue can be addressed and followed up. It’s all about good symptom management for quality of life.
- Tell your neurologist exactly how you have been.
- Exercise to increase endorphins and give you more energy.
- Join to a Parkinson’s NSW Support Group, exercise group or friendship group to reduce social isolation.
- Be patient with anyone living with Parkinson’s. Parkinson’s slows the cognitive thought process required to respond to a question. When you ask a question, give them ample time to respond. Let them respond in their own time so that they are part of the conversation and don’t come to fear social interactions.
- Request a call from a Parkinson’s NSW Registered Nurse to be referred to one of our Parkinson’s counsellors.