On Monday I got a mobility scooter. It has taken over 18 months to get this machine through the HSE, and over this time my walking has become even worse. Just to set the scene, my walking has steadily decreased over the last 6 years since my car accident. Gradually I am needing more aids to help me get around.
This lack of mobility impacted being able to work, as I was a door-to-door market researcher. I remember the day when I was looking for people to survey in Galway, and I found it impossible to climb the small slopes leading to the front door of every house on the street where I was working. It was demoralising, as this work took me out of the house and helped me meet people. Traditional work was no longer an option. (See my post about this here)
Using Functional Electrical Stimulation
At my next neurology appointment, my doctor suggested I try Functional Electrical Stimulation. The local MS Society’s physiotherapist was using this to help maintain the muscle memory & strength of people with MS. When I tried it in July 2018, it was amazing (you can see the video below), and I resolved to get one on my birthday in Jan 2019. I could not achieve this goal, but by August 2019 I had my own FES device.
This was another highlight. In Oct 2019 I was on holiday in San Francisco, and using this I could walk all around Alcatraz, and walk barefoot on the beach. FES was keeping me walking and upright. However, by April 2020, I was back in hospital as my walk had become even worse, despite using Sativex since Nov 2019. On my trip to the USA, I found cannabis oil helped my mobility and pain. As cannabis oil, with THC, is illegal in Ireland, I have had to use Sativex, which is a medicalised version, which has only THC & CBD in it, removing all the other cannabinoids which are in the natural version. (Read more about my trip to San Francisco here)
During the hospital visit I had IV steroids, which really helped my walk. In fact, I was walking almost normally, with the help of a Hip Flexor Assist device. However, I also was trying a new pain medication for my Persistent Post Traumatic Headaches and this caused me to lose all my positive gains from the steroids. Back to square one again. It was depressing. After finding success with something, it is then taken away, is hard to handle and to have it happen repeatedly, crap.
At this point, I really needed the mobility scooter if I wanted to get around. COVID-19 delayed many things around my rehab and needed assertive devices. Step by step I got a perching stool for the kitchen, a shower stool, walking frame, and raised toilet seat with handles to push myself off the seat. When The OT saw my decline, they recommended a stairlift, for safety and access reasons.
Meanwhile, I was worried about my fitness. No cardio was possible as I couldn’t access the gym, as I am one of the highly vulnerable, because of two lung conditions, and being disabled. I got a recumbent bicycle and a multi-gym. These have helped me, especially rebuilding upper body strength, increasing my heart rate, and most importantly, improving stamina. This has helped me with the stairs, as I have the strength to pull myself up. Even with this there are now days when I have to shuffle up the stairs on my bottom, or go to my bedroom earlier in the day, if I don’t think I’ll be able to make it up later in the day.
Some days my walking is good and I can manage a 20-minute walk and some days I cannot leave the house. It is so variable and the usual cause is when my headaches get worse than usual. The impact can last for days, and it takes time, and rest, to recover. With my mobility scooter I can now still go outside for a walk with my partner, me safely on my scooter, and she running to keep up (just joking:-D).
With this tool, I can now truly enjoy the ‘walk’ as I don’t have to concentrate so much on walking. I now realise I put so much effort into walking, I was losing the enjoyable bit of the walk, viewing the amazing countryside, where I live. Now I can look up and even smell the breeze. It is liberating. Now I have two walks a day, if I can manage it. One real walk, putting one foot in front of the other, using FES to keep my right leg moving. Walking has been shown to be important to help maintain cognitive ability, so I must continue with that. If I can, I will go for a second ‘walk’, which is the really enjoyable one.
Looking after my health
I have to make sure I continue with both, as they are vital for maintaining my mental and physical health. It will be very tempting to only go for the mobility scooter ‘walk’, as it is much easier and at the moment uses much less energy. However, it could be catastrophic for my physical health, so I must build it into my daily routine. It will be hard, as the straightforward route will be so tempting. Over the years I have found the simple road is often much shorter, and the destination of smaller value.
On Monday I will place the order for the stairlift, and I expect it will be two months before it will arrive. This will also have its positives and negatives. Safety and better access when I am fatigued or my legs are bad is the main positive. My physiotherapist loved that I have stairs in my home. It is an excellent exercise to help maintain my legs. So when the stairlift arrives, will I be lazy and always use the stairlift? I’ll need to be careful about this too. As my mobility deteriorates, I need more assistance equipment. It is very tempting to use these all the time, as they make life so much easier, in the short term. Long term they can rob me of fitness and mobility. Finding the right balance is difficult.
I have to accept they will not cure me of this illness and the decline is inevitable. I need to make sure I don’t speed up this decline due to laziness, but slow it down through suitable use of the tools available to ease the physical burden of MS.