Must-know tools and tips for people with Parkinson’s disease
The right adjustments can help people with Parkinson’s disease live life to the fullest. These tips and tricks offer an insight to the challenges that might come with Parkinson’s while offering alternative solutions.
Living with Parkinson’s disease isn’t easy, especially if you have been newly diagnosed. Many questions arise, mostly around what you can or can’t do going forward, and this can have a strain on your mental and emotional wellbeing. However, there’s good news! With the right adjustments and practices, you CAN do the things you love doing!
April is the month of Parkinson’s awareness – in order to contribute to the lives of those affected by this disease, we have compiled a list of tips and tricks, a go-to guide for those living with Parkinson’s for overcoming the hurdles this condition often presents. Between 7 and 10 million people live with Parkinson’s worldwide, making it a relatively common disease. And while every person and every situation is different, there are some common solutions that can assist in living a full life with Parkinson’s.
First things first – depending on the degree of Parkinson’s you have, your home might need some adjustments to make it more liveable. Renovations, be they big or small, can mean the difference between dependence and independence, and some of them are very easy to do.
Small changes and quick fixes
Small changes could include getting rid of potential obstacles from the floor such as rugs, mats, or extension cords, and creating a continuous path around your house that’s uninterrupted by furniture. This will help you get around without any unnecessary obstructions, and will reduce the risk of falling as well. To substitute smaller pieces of your furniture, get some non-slip mats for your bathroom, stairs, or anywhere else they might come in handy, some outdoor solar lighting and night lights for inside, and chairs with higher seat level and strong armrests. Other Parkinson’s friendly adjustments include elevated toilet seats or shower chairs. People often swear by firm cushions on sofas and recliners as a way to make getting up easier.
Bigger changes and home renovations
Besides the small, easy-to-buy solutions, there remains the issue of a home not designed with Parkinson’s in mind. However, fear not! With some handy renovations, any house can be made into a safe haven. As anyone experienced with Parkinson’s will tell you, railings are a must. It’s best to have something fixed to hold onto at any spot in your home. These can be installed at a small cost and will save you from falling on many occasions. If you have a wheelchair, then the next thing to consider are building ramps, removing any carpeting, and investing in some wider doorways. And, as we have already mentioned, railings, railings, railings!
As part of updating your home and creating a Parkinson’s friendly space, you should consider investing in some handy gadgets. Technology has given riseto a lot of great inventions when it comes to Parkinson’s disease, from tremor-resistant crockery, non-slip utensils and stabilising bottle openers to electric toothbrushes, transportable suction grab bars, and much more. To have a browse through all the great, accessible tools available to Parkinson’s patients, check out https://www.patienthandling.com.au/parkinsons-disease/.
Moving past physical limitations and overcoming material obstacles is important, but so is maintaining emotional and mental health, especially at early stages when you’re still just adjusting. A strong support network can help you deal with your situation with good humour, understanding, and love. Whether that support network is made up of family, friends, others with the same disease, or health specialists, don’t be afraid to seek help and talk to others about your experiences living with Parkinson’s. They can help more than you think.
For example, Fred found his biggest supporter in his Exercise Physiologist, Nick. As the two got to spend time together, Nick started coming up with more personalised ways of getting Fred’s mobility back, such as going to the driving range, the local pool, or out for a game of croquet. The two have become great friends, and Fred’s mobility and attitude towards life has improved immensely. Nick has found that what motivates one person doesn’t necessarily motivate the next. It’s about personal connections and finding those who care about you and vice versa.
As Fred has put it, “I trust him. I feel comfortable with Nick and like it when he visits. With Nick, I feel happy and relaxed.” That’s what all support networks should feel like. For now, Fred and Nick have conquered the driving range, and have their eyes set on the next challenge: a beach walk!
One of the biggest fears that enters someone’s mind when they first find out they have Parkinson’s is that they will miss out on different things due to the disease. It’s important to know that not all activities are limited, and that with the right planning, you can be a part of any occasion.
Planning your periods of rest is really important. Whether it’s a family picnic in the park or someone’s birthday celebration, make sure you have at least one rest period a day. Elevate your legs when you’re sitting for longer periods, and rest between activities that take more energy. Try not to schedule too many things into one day – if you know you have an event or occasion coming up, make sure it’s the only thing to do that day. It’s best not to plan any activities right after a meal. And don’t forget – if at any point you need help from family or friends, don’t be afraid to speak up!
Another great way to alleviate a fear of missing out is stepping up and organising plans yourself. Connecting with your friends and loved ones can help with your emotional wellbeing. Try being creative together – many people with Parkinson’s say that their symptoms tend to lessen while engaged in a creative activity, such as painting, singing, or dancing. Creative outlets can be therapeutic while building relationships with other people. Other great ideas include games, meditative activities like fishing, or simply long-enjoyed activities modified to be accessible by everyone.
Fear of missing out on something as big as travelling often comes up for people with Parkinson’s. The good news is that nothing is impossible, and so travelling doesn’t have to become a thing of the past. While travelling with Parkinson’s may not be as spontaneous as your younger adventures have been, you can still enjoy some time away. The key, of course, is in planning.
Whether it’s things to pack, things to do, or things not to forget, checklists will help you feel in control and get you through the troublesome part of travelling, which is actually getting to the destination.
Always carry a list of your meds and notes from your doctor, especially if you might end up in situations where a medical explanation is required for certain prescription medicines (such as airports). Make sure you pack your meds in your carry-on bag which is always in reach. It’s a good idea to bring some extra medications, just in case. Keep them in their original, labelled containers, in case you need to go through security or get refills.
It’s generally a good idea to plan to be early everywhere you go to avoid missing out on anything, be that your flight, tickets to an attraction, or organised tours. Being early will also allow for any mishaps – even if you have trouble with something on the way there, you will know that you can still make it, and that can be the difference between a relaxed and a stressful holiday. It will also allow you to pace yourself – it’s essential that you don’t wear yourself out. Otherwise, what’s the point of travelling?
While this varies a lot depending on your destination, generally there will be opportunities to make things easier for yourself – why not take them? Ask for disability assistance on flights, or a special needsroom on the first floor of a hotel. Think of the people helping you out as your team of dedicated holiday-makers – let them treat you with their assistance and enjoy sitting back and relaxing. Although, maybe don’t ask the receptionist to feed you grapes and fan you with palm leaves – they might not take the joke the right way.
Living with Parkinson’s has its special set of challenges, and what you can or cannot do will largely depend on your personal circumstance. However, following these tips and getting the right adjustments will help you feel more like yourself.