Edward Smith, MD, a neurologist, discusses why setting realistic expectations around physical and occupational therapy is important in Duchenne, emphasizing open communication, flexibility in treatment plans, and avoiding caregiver guilt when challenges arise.
Transcript
I’ve seen this a lot over the years with just physical therapy, occupational therapy. You know, here you need to do these stretches three days a week or five days a week. And if you do this, it’s going to help with prevention of joint contractors.
And lo and behold the patient develops joint contractors over — over many years. And the parents beat themselves up because they say, “We could have done more, we could have stretched more.” when in reality a lot of that is inevitable, even with all of the stretching in the world.
That just like with prescribing a medication, that discussion needs to be had upfront between the physical therapist, the occupational therapist, the physician prescribing the physical occupational therapy, and the family so that you don’t end up in that spot where the family isn’t blaming themselves or worried about being judged by the care team for for noncompliance.
So a lot of this entire discussion around compliance is about expectations and really upfront describing, clarifying, what potential reasons for noncompliance might come up in the future and that they’re understandable.
And let’s talk about those. And, you know, maybe my treatment plan that I’m recommending to you is not the best idea with whatever’s going on in your life or your situation. You know, there may be an alternative treatment we could talk about, whether it’s because of a frequent dosing regimen, or you know a prescription for for five days a week.
Physical therapy and occupational therapy and aquatic therapy that doesn’t leave you any time to live life.
