Camping with MS: How OTs can help you
Revelling in the beauty of nature, timing out from the busy day-to-day and spending valuable time with loved ones are all part of what makes camping so special. To MSWA Client Sue Hyde and her husband, it is their way of remaining connected with one another, their friends and nature. Sue grew up camping often with her family, and was even a scout leader in New Zealand. For many people like Sue camping isn’t just a fun hobby or holiday, it is part of who they are.
Camping, of course, can have its challenges. Whether it be the mattress which looked much thicker online, “this wasn’t on the weather forecast!” becoming a common phrase, or deciphering instructions for a new tent that seems to be written in hieroglyphics – there’s bound to be something to keep the trip interesting. Whilst this can be an inconvenient bump in the road, these challenges are not likely to keep an avid camper away.
However, for people living with neurological conditions, like multiple sclerosis (MS), these challenges are only the beginning, and condition-related challenges are often the reason why they slow down or stop camping altogether. Sue mentioned feeling unstable on camper steps and uneven terrains, unable to control her body temperature and feeling incredibly fatigued by the end of the day – all of which made camping more difficult than ever before. One night, Sue fell and her legs were stuck in her campervan. It was this instance that made her realised something needs to change.
Determined to continue doing what she loves, Sue reached out to the MSWA Occupational Therapy (OT) team for support. Occupational Therapy is all about keeping you engaged in activities and tasks that are important to you by finding ways to build new skills, adapt tasks or finding equipment to support. Together, with her OT, Sue identified specific challenges and came up with ways to overcome it.
Vehicle set up
Entering and exiting a vehicle is so important, especially when this is also your accommodation! Sue found it challenging to get in and out of the cab passenger door, the main body of her campervan and even navigating inside it.
After exploring various low-cost assistive technology options with an MSWA OT, the perfect combo for Sue was the Handybar which provided a stable handhold and a small step to bring her to a more comfortable height.
Getting in and out of the main campervan entrance can be tricky and required trialling various options. Initially additional steps were introduced to reduce the height of each step combined with a grab rail that was installed on the outside of the vehicle. However, the multiple steps became challenging for Sue and she avoided getting in and out of the campervan. After consulting with her OT, Sue trialled the Motorstep, a portable motorised platform which could bring her from level ground to the height of the bus entry simply with a press of a button!
Navigating inside the campervan was the next challenge. Sue and her OT worked to trial and implement a swivel cushion which turns on the spot and allows her to sit under her table, slide in bed rail to assist with getting in and out of bed, and notably, Sue’s favourite, a leg lifter to assist with lifting her legs in to bed.
Getting around the campgrounds
Being able to access and enjoy the campgrounds can make or break the experience. Sue’s ability to walk unaided is limited and she relies on a four wheeled walker, scooter or powered wheelchair for mobility. She often looks for spots that are level and even to support her mobility. She also highly recommends a headlamp to light the way to keep your hands free.
Other considerations include checking what toilets are available on site, how close you are to the main areas you’d like to spend time in and any shops or other local areas you may need to regularly access. Sue prioritises campgrounds in which she can enjoy her time on the site, reducing her need to move around too much.
For more information on wheelchair accessible camping sites visit HipCamp.
Temperature regulation
People living with MS often experience thermoregulatory dysfunction and it can be exacerbated when you’re on a camping trip. Thermoregulatory dysfunction is a loss of capacity to control core and body temperature within the normal range, meaning individuals are more likely to be affected with temperature changes.
To manage her thermoregulation, Sue found the following items useful including a portable fan that sits around her neck, quick dry towels and spray bottles to cool her down quickly, a bucket of water to cool her feet, choosing cold over hot food and positioning her campervan strategically around the sun.
To find out more about thermoregulatory function or join us at our next thermoregulation workshop by contacting [email protected].
Fatigue
Fatigue is often one of the most debilitating symptoms of MS and one that needs to be managed to support camping long-term. For Sue, better managing her MS symptoms with the strategies above has meant her energy can be spent on enjoying herself rather than symptom management. Additionally, Sue adapts what she does each day, picking activities which are lower energy, reducing mobility and spending more time in one serene spot when she has less energy available.
Adapting as we go
We know that neurological conditions, especially progressive conditions like MS can change over time. The impact of symptoms and how they look day-to-day can vary greatly. Sue and her MSWA OT are constantly monitoring and adapting what strategies, tools and options are working and not working, and problem solving as they go! Next on their list is exploring options to transport Sue’s scooter or powered wheelchair so she can use these when camping too.
Living with MS doesn’t mean Sue needs to stop camping. Instead, it now looks a little different for Sue – but with her new strategies and assistive technology in place she can continue camping. She currently ventures out once a month for four-five days at a time to explore local regions. Sue loves the feeling of freedom camping offers her and cited her favourite place to go to is anywhere along the beautiful Blackwood River. She’s constantly sharing her equipment, tips and tricks with friends and continues to enjoy the beauty of the great outdoors.
“I love being outside and in the outdoors” said Sue.
Sue is a happy camper and has no plans for MS to stop her!
Take the next step with MSWA
Occupational Therapy is all about helping you manage the impact of your neurological condition so you can continue to do what is important to you! It is not about telling you what you cannot do but rather finding new and creative ways to connect you with what you love.
Get in touch with our team and find out how MSWA Occupational Therapy services can help!
