MS: Busting the Myths
David Kyle, a father of four from Upper Hutt is the 2022 recipient of Mastering Mountains Grant. David’s mindset and objective are inspirational. At Mastering Mountains, our goal is to enable people with MS and functional neurological disorder to get outdoors, achieve their goals and experience positive, life-long change. We were impressed with David’s determination to develop the skills, strength and stamina needed to complete the challenging 20 km Karapoti Classic mountain bike race and to continue cycling with friends and family long into the future.
Cycling has been a big part of David’s life. David, who keeps busy raising four kids under the age of eight with his wife Mikola, works for a German med-tech company and was diagnosed with MS two years ago. Before his diagnosis, David did a large amount of road cycling and mountain biking, including long-distance races. Additionally, David regularly participated in group cycling and mountain biking with friends; it was an essential community.
However, David’s MS symptoms interfere with his ability to get out and participate in his cycling community. Leg weakness and difficulties with heat management make it hard to get out on his bike – and he finds the limitations frustrating. David explains: “It’s impossible to keep up with my MTB mates on a long climb when we go out for a ride, where my left leg basically becomes a dead weight.”
More significantly, David’s eldest loves cycling, and David’s MS limits his ability to participate in the sport with him. “My 8-year-old is also a keen mountain biker, and I hope I can keep riding with him as he gets older and faster.” The Mastering Mountains team believes there is tremendous value in being able to enjoy the outdoors with family. For this reason, we are committed to helping secure this future for David and his family.
Mastering Mountains will pay for nine months of weekly training sessions with a specialist coach. We believe that the mental skills and symptom-management strategies David will learn, in addition to the physical training, will enable him to achieve his goal and enjoy cycling long into the future. We are also contributing to the costs of an electric mountain bike, empowering him to keep up with his mates during those long ascents in the hills above Upper Hutt.
MitoQ, our generous partner, has also given David a nine-month supply of MitoQ Pure, providing him with more energy and speeding his recovery after training. We will also supply David with up to $500 of gear from Macpac, our preferred outdoor supplier.
We are excited about David’s mission to complete the Karapoti Classic and how this will inspire the wider community. His determination to push back on his MS through rehabilitation and lifestyle is exemplary. David wants to be in control of his MS “rather than the other way around” and to address “people’s stigma and lack of knowledge around MS – [to show that people with MS] can still be active and push through symptoms to achieve physical goals.” Article written by Nick Allen, Mastering Mountains.
Last year I was the successful recipient of the Mastering Mountains Grant for people with FND and MS. My objective was to climb a 3,000m peak the Southern Alps. When I first submitted my application for the Grant I had no idea of what my body was capable of. I had been diagnosed with MS just a year and a half earlier and I was still figuring it all out.
Prior to my diagnosis I had been an avid tramper and alpine climber. Although my activities had reduced a little with the arrival of my daughter, I was still managing to squeeze in a few good adventures each year. However since my diagnosis the longest walk I had completed was a 3 hour saunter with a light day pack. So the goal to climb a 3,000m peak was definitely a ‘stetch target’! When I heard I was the successful recipient of the Grant I began to worry I had over-committed. But there’s nothing like a goal to get me motivated.
I began by connecting with a neuro-physio, who put together a training programme. We worked through a range of strengthening exercises and I started to build my cardio endurance. Starting with short hill walks I progressed to longer days, overnight tramps and eventually some alpine trips.
Imagine; you are watching your family and grandchildren excitedly getting ready to leave for a stunning new walk, one that you would love to go on, your grandchildren say excitedly, “Nanny, do you want to come with us?” Instead of replying, yes, you have to say “Sorry, Nanny’s legs don’t work properly,” and wave goodbye. For 2017 Mastering Mountains Grant recipient Michelle Gerrits, this was her reality. But not anymore.
Michelle was awarded one of the 2017 Mastering Mountains Grants, which has been used to obtain an Alinker Bike. Her aim, to complete a nine km section of the Great River Ride, from Ngaruawahia to Horotiu, with her family and grandchildren. The Alinker bike is a “non-motorised, walking bike with no pedals”, designed specifically to support the user and enable him or her to stay balanced and comfortable while exercising. In addition to the Alinker Bike, Michelle was also given MitoQ Serum and Suppliements to help rebuild and support her system, as well as specialised clothing from Macpac to help keep her keep cool and comfortable when training.
When talking with Michelle, you immediately sense a warm bubbly personality; someone who is determined not to let her MS stop her from doing things that she values the most. Her greatest motivation comes from her family, wanting to make memories with them — her grandchildren in particular.
Since being diagnosed five years ago, Michelle has suffered from severe numbness, tingling, balance and mobility issues. She finds work and social occasions hard: “I have to sit down as I can’t stand for long periods of time. Sometimes it is hard to mix and mingle.” However, one of the hardest things she has to deal with was not being able to keep up with her grandchildren or work on her lifestyle block.
Michelle believes that one of the best things she can do is to be proactive. “Don’t give up,” she says, “try and try again.” That’s why she’s focusing on building the strength and stamina she needs to go the distance and achieve her goal.
We asked her why she wanted to do this section of the Great River Ride. Her family has already done part of the track and her grandchildren constantly ask, “Nanny do you want to come with us.” She has to explain, “sorry, Nanny’s legs don’t work properly.” This makes her feel bad but also provides her with the motivation she needs: “now that I have the Alinker Bike, not only can I do the track with my family and grandchildren, but I can join them in doing so much more”.
The gift of the Alinker bike means that Michelle is no longer confined by distance and disability. The possibility of doing more and getting active has not only improved her physical wellbeing, but her outlook on life has brightened as well.
Michelle described how “disheartened”, she felt when she was first diagnosed, especially when thinking about the future, but now, she has a firm belief: “Don’t let the bad times get you down!” She is excited about the future and determined to complete the Ngaruawahia to Horotiu trail in the coming months. We look forward to watching her progress and hearing about all the new adventures she will be having thanks to the Mastering Mountains Grant, Macpac and MitoQ.
(Written by Mastering Mountains)
For Marlene Hessing, the diagnosis of Multiple Sclerosis originally meant no cure and no medicines. She was told it would only get worse and that she would end up in a wheelchair. She proved them wrong.
Now, almost 20 years later, Marlene has taken control of her MS and is determined and strong. She has left her wheelchair behind and after a time with a trolly and cane, she now walks unaided. Even though she still finds walking and balancing a challenge, she doesn’t want it to stop her from achieving her goals. Marlene is set on achieving the levels of strength and fitness she needs to complete the Goat Island Walkway (2 hour rounds trip) and Tiritiri Mantangi Island Walk ( 2 hour walk) with the help of Parkinson’s Counter Punch and MitoQ.
Marlene describes herself as a “warm, strong and independent lady who puts effort into everything I commit to — a survivor I guess.” And a survivor she is. Originally diagnosed with Relapsing Remitting MS in 1999, she was rediagnosed a few years later with Secondary Progessive MS. This meant that she had resign from her full-time job with Air New Zealand, having worked for them for more than 15 years. The advancement in her MS caused significant disability and although it was extremely hard at times, both physically and mentally, she was determined to fight back and not let MS win.
“Walking is person’s best medicine”, she explains, “its good for body and mind and I was a member of the Outdoors club at Air New Zealand. [I] loved spending time in the outdoors and with the other members”. Her love of walking and her fierce determination to stay out of the wheelchair takes her to the gym three times a week and keeps her going to the Yoga and Water Walking classes provided by MS Auckland. After four years of training and experiencing improvement, she now concentrates on working hard to regain her mobility, balance and gait.
“I knew that if I trained with a professional, they would help me to be consciously aware of using the correct technique while improving my gait, posture, arm movements, weight transferring and everything else that goes with safe and correct walking. I have lost these skills and need to retrain.
“It would mean the world to me to get back some fitness and participate again in walks and treks, especially in the bush. This is the best chance to beat the progression of MS”.
With help from Mastering Mountains grant, Marlene is receiving one on one personal training sessions with Counter Punch Parkinson’s to help her build her strength, balance, coordination and stamina in order for her to achieve her goals. Counter Punch Parkinson’s is a rehabilitation service designed for people with neurological conditions.
Reflecting on everything that has got her to this point, Marlene believes that the most important thing is to share your journey, stay hopeful and not look at worst case scenarios. Looking ahead, she believes that persevering with a positive attitude will keep her strong and positive, “No time is better than now.”
We wish her all the best and look forward to watching her progress and completing her goals.
(Written by Mastering Mountains)
The inaugural Grant was awarded in November 2016 to fund a personal trainer to help Sue achieve her dream of tramping over the Maungatautari Mountain. The 11km track has a 500m ascent which Sue estimated would take five hours to complete. “It’s a big mission! My MS and my current lack of fitness are the only reasons I have not yet done this,” said Sue when applying.
Sue works as the Administration Manager at the Maungatautari Ecological Island Trust in Pukeatua. “I love the role and I often get called into the Visitor Center, where I talk with visitors and tell them about the sanctuary and its tracks. The only problem is that I had to rely on second-hand information.”
The Panel were encouraged by Sue’s determination and reasons for wanting to complete this challenge; “I am looking forward to that feeling of achieving something that is out of reach with the support and encouragement of others. To me, it’s also really important to make memories with my young daughter. She is very active and I want to be able to participate in outdoor activities with her. Walking over Mt Maungatautari will help me achieve this and I believe that it will set me up for future adventures.”
Sue initially struggled with the additional exercise, thinking she never be fit enough. However, she soon overcame her initial fears and was off to a flying start managing to treble the amount of daily walking, building in daily bush walks at work and going to the gym once a week. “Every morning before I start work, my boss lets me go for a power walk for 35 minutes on the mountain tracks, I also climb the 16m tower three times a week, if not 4, which is 91 steps.” Despite an injury mid-way she was soon back on track with a renewed determination planning base to mountain peak training walks.
“Thanks to the personal training and regular exercise I am much fitter, my balance has improved and I have so much more confidence in myself, to not only get out more, and by myself, but also confidence that I can achieve this goal I have set myself.” Sue set herself a second challenge to lose 10kgs. “I started training and following the Overcoming MS diet in early January. Boy, does it feel good having shed those extra pounds and I feel much healthier.”
Before the walk, Sue admitted, “I am a little scared but very excited – scared as I know it will be no mean feat with my MS, but excited that I have every chance of achieving my goal due to all the support I have been given to get me there!”
Sue’s challenge took place on the 24th September 2017. “It was amazing, I was nervous as anything, however excited that the day had finally come.” Sue was supported by a team of 21 including staff from MS Waikato, other PwMS, her personal trainer, colleagues, Maungatautari Trust volunteers, friends and even a surprise visit from her Neurologist.
“I must admit the first two hours were hard going, steep uphill rises, however with such a big support group, encouragement and laughter we made it to the top of Maungatautari.” Following a lunch stop in the saddle, enjoying the rare birdlife and views, they reached the Visitors Centre where staff and Trustees had tea, a dairy free birthday cake and flowers waiting.
“I walked down the final slope towards the Visitors Centre to clapping and cheering. I was elated and overwhelmed with my achievement, thankful for the support I had from so many people and to be surrounded by such positivity. I inspired a few PwMS to do the walk with me and they achieved their goal too, an awesome effort! I feel honoured to have inspired others to push past MS and kick MS in the butt and say I can do this even with MS. MS may slow me down but it will not stop me! We all achieved something. I was smiling all the way and I am still smiling. I achieved. I met my goal. I lived my dream.”
“A huge thanks to the support I received from the Mastering Mountains Grant, sponsors, my trainer, friends and family. It would not have been possible without such amazing support.”
For your chance to apply for a Mastering Mountains Grant to achieve your outdoors goal see our Grants Page for more information