Maybe the One Beneficial Constant in an Ever-progressing Disease

Physiotherapists could provide Ataxians with a therapeutic service well beyond exercise if their role in working with patients with a degenerative disease is understood and acted upon.

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I have a terrific PT and I am truly grateful. Paula has years of experience in her field and has helped traumatically injured, cardiac, and post-surgical patients toward a positive state of rehabilitation. But when I first met Paula we had a very serious heart-to-heart chat about expectations. Our thinking was aligned. Physiotherapy was not going to be about “recovery”, “rehabilitation”, or “short-term”. Paula and I both understood that ataxia/MSA was degenerative. She understood and appreciated my two goals were first safety and lifestyle maintenance.

I am pretty self-motivated when it comes to fitness and exercise. During that first session, Paula demonstrated and I practiced six basic movements and exercises. She asked me, “So, do you want to see me next week or in two weeks.” My reply was, “No. I don’t want to see you for another four to six weeks. It is going to take me that long to really get a handle on these exercises. I will do them five days a week at my gym sessions then report back.” I don’t need a gym partner or motivator or someone to guilt me like my childhood piano teacher. I needed an expert to observe, advise, adjust, and expand my training. Maybe you need one of those people and that is great to know at the outset because finding the motivation to move when you are fatigued, weak, wobbly, and dizzy at 8:30 am is not easy.

My question to you is, what are you willing to endure in order to be safer and independent?

Get that answer squared in your head and then start physiotherapy.

Here’s an interesting fact that is evident on our FaceBook pages and that has been research-proven. Many ataxia patients don’t engage in any form of PT. Many begin PT but drop out and some perform their PT regularly. A research study in the UK indicated that only 66% of ataxia patients-study-subjects even experienced PT (Daker-White, 2013)! This to me is disturbing because maintaining movement, strength, and practicing balance and coordination is about the only real tool in our toolbox for treating the motor systems of ataxia.

The study also indicated that the typical PT model of service did NOT encourage ataxia patients to continue. Why? A second UK study by Cassidy, Naylor, and Reynold (2018) identified the reasons behind poor PT uptake by patients — and it isn’t the patient’s fault.

Daker-White and colleagues (2013) reported that an idiopathic diagnosis of ataxia was not helpful to patients as they sought therapeutic options. The ambiguity of the diagnosis resisted formulaic responses as is often used with other rehabilitation and treatments leaving therapists with no direction. Daker-White, followed by Cassidy (2018) revealed that the typical six-week therapy model that is followed by a physiotherapist not familiar with degenerative diseases was actually detrimental to ataxia patient’s motivation and therapeutic responsiveness.

A third finding found that the typical physiotherapist's approach to weekly measuring rehabilitation and progress was demoralizing and demeaning as it failed to see the therapy from the patient’s perspective. Improvement and rehabilitation are unlikely, but maintenance and adaptation is a very achievable outcome.

Ataxians recognized and voiced that they needed a different PT approach. Through their self-discovery of activities and movement responses, patients wanted PT support to help them to be less isolated, employable, and safely in control of their lives as much as possible. Patients’ goals also included the need to counter depression and move against the stigma of being disabled.

Ataxians were more interested in a “long-term and continuing therapeutic relationship combined with collaborative decision making” based on physio and psycho-social needs.

These studies also pointed out that Ataxians were more interested in a “long-term and continuing therapeutic relationship combined with collaborative decision making” based on physio and psycho-social needs. Being sent home with a list of exercises and an expectation to manage ataxia by themselves only replicated the here’s what it is, go have a good life attitude Ataxians often receive from other medical personnel.

Clearly, the expectations about physiotherapy and ataxia patients seem to be different between many patients and their therapists and medical practitioners. Patients perceptions are that they are often seen as individuals with balance, strength, and coordination issues that need repair. What Ataxians expressed is that they were seeking a supportive, ongoing relationship that was respectful of the degenerative nature of the disease and patient-centric collaboration to support movement, safety, mental well-being, and lifestyle.

After reading this research I felt even more blessed to have someone like Paula joining me on this journey. I also have greater clarity as to why so many people within our ataxia community avoid physio or give up on it. And we know we shouldn’t and when we do give in, we may be adding a ting of guilt to our psyche — that this is yet another thing I can’t do.

Sure, we are responsible for our attitudes and reactions. Yes, it is not easy to push through fatigue, dizziness, stiffness, and nausea to go do some balance exercise. But maybe we could actually handle that stuff if we knew that the model of physiotherapy respected and understood all that. Maybe we would persist with our movement activities if we knew we weren’t being graded every week as to how we have or have not improved, only to be discharged after six weeks. It is possible that while we can shoulder some of the blame for such a significant physiotherapy failure rate, a whole lot of the blame is also on a systemic treatment strategy that is counterintuitive to the treatment of long-term degenerative disease.

On the same note, we must have realistic expectations about this or any other therapy. It goes with the territory of having a progressive degenerative disease. PT will not cure ataxia. PT will not cure even your balance issues. It will help us to live better with what we have and help us to understand and implement adaptations.

What can we do about working within the current systemic treatment strategy? Here are my suggestions, some drawn from my own experience of success with Paula and these research findings.

1. Self-assess before you even think of going to see a PT. What do you want to maintain and maybe improve? And don’t limit it to things like how many steps you can take. Think real. “I want to maintain my ability to walk the dog.” “I want to improve my balance when I turn around in the kitchen.” “I want to be able to push my walker more upright so I feel good about how I look.” “I want to be able to walk with someone in the park using my walking poles and feel safe.” “I want to put on my socks without falling off the bed.” Take these to the meeting with the PT.

2. Advocate for yourself right off the bat. Tell them about your ataxia. Give them five symptoms that impact your lifestyle. Tell them your goals (above). Ask them if they have ever treated long-term degenerative disease patients and what was the approach they used. If they haven’t, that’s OK, but be forthright and ask if they are prepared to learn, because it is different. Tell them that you don’t need to see them every week (unless you need a coach/personal trainer approach and have the money for that). As much for yourself as for them, tell them that you are and want to be an independent responsible adult who can do stuff, once we figure out what the stuff is going to be.

3. Get 4-7 exercises/activities that are tailored to your goals, not theirs. Make sure that you can actually do them and that you can do them safely in your own space. (I go to the gym because it is a safer space than my house.)

4. Make an appointment to see them again in 4-6 weeks to review the effectiveness (notice I didn’t say progress or improvement) of the activities.

5. Tell three people that this is what you are doing and that you need their support to bug you about getting a routine going, be there if necessary to cheer you on, or take you for coffee after you have completed your activities. The last one affirms that what you are practicing addresses your goal of adapting and normalizing in the face of ataxia!

6. Finally, plan to do the activities for 21 days. Mark the days on your calendar or a list on your refrigerator and check them off as you go. 21 days happens to be the threshold for making a habit change. If there are gaps, just add a few more days and carry on. Small bites and small steps can make a huge difference in living with a degenerative disease. You are employing the same strategy the diseases do to make our lives challenging. Give it back to the beast with pride!

When we live into ataxia we are really living.

References:

Cassidy, E., Naylor, S., & Reynolds, F. (2018). The meanings of physiotherapy and exercise for people living with progressive cerebellar ataxia: an interpretative phenomenological analysis. Disability and Rehabilitation, 40(8), 894-904. https://doi.org/10.1080/09638288.2016.1277400

Daker-White, G., Greenfield, J., & Ealing, J. (2013). "Six sessions is a drop in the ocean": an exploratory study of neurological physiotherapy in idiopathic and inherited ataxias. Physiotherapy, 99(4), 335–340. https://doi.org/10.1016/j.physio.2013.02.001