Significant benefits for HSP
HSPer, Foundation committee member and Fundraising Manager, Tim Xiros, talks about going to a neuro physiotherapist and how it has helped him.
After attending the HSP Workshop in Adelaide in November 2011 and participating in the “Managing and Maintaining Mobility” presentation given by neurophysiotherapist Tamina Levy, on my return to Sydney I decided to pursue neurophysiotherapy as treatment for my HSP. I was a little sceptical as I had seen numerous physios in the past who were not familiar with HSP, so maintaining a positive belief that this treatment would be of benefit to me was my first challenge.
The next step was to find a neurophysio in Sydney. I was working in Chatswood at the time so I wanted to find a practice that was close to my office. After running a search on the Australian Physiotherapists Association’s website at www.physiotherapy.asn.au for physios close to Chatswood who specialise in neurology treatment, I found Melissa McConaghy at the Advance Rehab Centre in St.Leonards (www.archealth.com.au) and booked an appointment.
At my first appointment we had a chat about my condition and what was it that I was hoping to achieve from the consultation. I explained some of the symptoms that I had such as the gait, muscle stiffness and weakness and that my long term objective was to improve my walking. At the time I was struggling to walk 200 metres without resting so any improvement to this distance would have been worthwhile.
Melissa then examined me, instructing me to do various exercises whilst I was in both standing and sitting positions. Using markers along the length of the room, I then walked up and down whilst Melissa assisted by other members of her team, identified my major areas of weakness. To be sure, when I stopped walking she asked me to do some more exercises that would highlight to her the exact symptoms that cause the gait and spasticity to occur. I then sat down again with Melissa and she explained to me the findings from her initial assessment (using medical terms and plain English):
- Weakness of hip flexors bilaterally – The hip flexor muscles are located in the front of your leg, above the thigh muscles, and they act to bring your leg up towards your trunk.
- Rectus femoris spasticity bilaterally – The rectus femoris is situated in the middle of the front of the thigh. Rectus femoris spasticity is one of the main causes of reduced knee flexion in swing phase, commonly known as stiff knee gait.
- Hamstring spasticity bilaterally – Hamstring tightness and stiffness makes it difficult to move your leg backward and bend your heel back to your buttocks. Stiffness in the hamstrings can also prevent normal range of motion in the hip or the knee joints.
- Calf spasticity bilaterally – In HSP, calf spasticity is usually the cause for symptoms such as foot drop, high arches and hammer toes.
Seeing the therapist is one thing, but the lasting benefits come from the customised exercise program that she gave me to do regularly by myself. Make no mistake, this is the absolute key to success. The exercises were focused on lifting my knees to build strength in my hip flexors, stretching my hamstrings and raising my calves.
At my next appointment, Melissa reviewed my ability to complete the exercises given to me the week earlier. We both noticed significant improvement in not only the number of sets and repetitions for each exercise, but also in flexibility and range of movement. From these results, this convinced me to commit to more sessions. After another hour of intense exercises, Melissa took video footage of my walking from both side and front angles.
Each subsequent session got harder and more difficult. The sessions were more demanding and challenged me not only physically but also mentally. In addition to the hip flexor, hamstring and calf exercises, we worked on other exercises including leg presses, cycling, squats, lunges, stepping up/over and sitting techniques. In between sessions I was doing my own personal training and continuing the prescribed program of exercises at the gym.
After week 4, Melissa introduced me to orthotics. She arranged for Darren the orthotist to see me, and he presented me with a range of products to try that are specifically designed to prevent foot drop and dragging of the feet. After trying all products including the electronic device WalkAide, I found the Noodle AFO to personally be of most benefit. This type of AFO is constructed using lightweight carbon fibre material and is designed to improve gait efficiency. Darren measured my foot and ordered the AFO to my measurements, but just for my left leg as both legs would have been too much of an adjustment.
By week 6, I was feeling less stiffness and more strength in my legs than I had experienced in a while. I was training hard in the gym and walking much longer distances. The walking distance between home and railway station and railway station to the office was far easier to complete and required less cardio effort. Even my family and friends were noticing differences.
The next week my new AFO had arrived and I couldn’t wait to try it on! It fitted with ease and the difference it made was immediate. I felt less weight on my legs, more balanced and had improved gait efficiency due to better feet clearance off the ground. At the end of this session, Darren brought out the video again and he filmed me with and without the AFO. He also timed me walking over set distances, with and without the AFO, and my times were close to 20% faster with the AFO on!
I finished the program after 8 weeks with a review from Melissa of my achievements to date. The program helped to maintain movement in my hip flexors, reduce spasticity in my hamstrings and calves and improve my gait. The biggest achievement for me was that I could manage to walk over 500 metres with relative ease.
Today, close to 12 months since finishing the program, I still maintain the exercise plan by training 4 to 5 times a week at the gym. I doubt very much that I would have been able to travel to Europe for 5 months last year had it not been for the program.
As a progressive condition, from my experience, it is possible to stall the rate of progression and achieve a longer period of quality mobility, and keeping active helps get me there.
I found visiting the neurophysio to be an investment in my long term mobility and formed part of my personal HSP management plan. My program works for me because it is custom designed for me. So it is essential to be assessed and work with a neuro physiotherapist to the point where the program is delivering the desired results with no adverse consequences. So do yourself a favour and see a neuro physiotherapist.
I wish for all HSPers to share similar success stories!
Thanks for reading my story.
Tim Xiros