“You’ve got HSP …”

Posted - February 2018 in Living with HSP - Management & Treatment News

“There is nothing that can be done”

 

Hands up how many HSPers have heard these words from a neurologist?

 

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Unfortunately, all too many! What would be much more helpful as well as more accurate is if the neurologist said “there is nothing that I can do to help you treat the disease itself, but there are things that others can do and that you can do for yourself that can make a big difference in your functionality and quality of life”.

 

 

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It is a fact that a fit, flexible HSPer who undertakes a regular program of appropriately prescribed exercise and movement, and maintains good bodyweight experiences significantly higher functionality and quality of life than does an HSPer who doesn’t exercise and is overweight.

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The difference in quality of life is not restricted to physical capabilities and mobility, it extends to improvements in aspects of mental health such as mood, outlook and attitude, and the avoidance of depression.

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Neurophysiotherapy

One of the best investments that HSPers can make is to see a specialist neurophysiotherapist or at least a physiotherapist with neurological training. The ultimate aim is to have a program of movement and exercise that can be largely self-managed. It is specifically designed with their symptom profile, functionality and capability in mind.

 

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The first step is assessment of functionality and capability, especially in regard to mobility but also in a broader sense. This includes detailed assessment of the nature, type and extent of symptoms – which muscles are spastic, which muscles are weak, the relative balance of muscles, skeletal or structural issues with the back, legs and feet, as well as the joints. A thorough assessment of what is going on with the parts as well as in the ‘whole’.

 

Based on that, there may be a necessity for particular types of treatment, which could be for shorter or longer term. At the same time, the neurophysiotherapist is developing a plan and program of movement and exercise aimed at maximising functionality and mobility. In the early stages, this program may be implemented under the guidance of the neurophysiotherapist, who will be assessing and monitoring performance and adjusting the program to avoid adverse effects and maximise positive impact. Feedback from the HSPer is important in this process of monitoring and improvement.

 

Such programs are designed for regular implementation, perhaps with a daily or twice-daily component, and other parts of the program to be done three times a week. This is largely self-monitored and managed, with return visits to the neurophysiotherapist at intervals for monitoring, assessing progress and increasing the level of challenge as appropriate.

 

Even from the start, such programs are ‘owned’ by the HSPer. The neurophysiotherapist assists and facilitates, but it should not be thought of as “going for treatment”. The neurophysiotherapist’s role is best seen as expert support for a self-managed program of self-improvement.

 

Other allied health professionals

It may be that the neurophysiotherapist recommends that you see a podiatrist, occupational therapist or even an orthopaedic specialist to deal with particular issues that you have.

 

Take charge!

HSPers need to be their own best friends in the quest to maximise functionality and mobility. Take the lead, take charge, make it happen! There is a listing of community recommended medical practitioners on the website. The Australian Physiotherapy Association also has a search facility on their website where you can enter location even sort by neurological specialty. If you have no luck identifying a suitable physiotherapist, email us and we will do our best to help you find one.

 

Comments on this story

  1. Joanna posted at 11:57 am on 15 April 2018Reply

    Hello!
    My name is Joanna and I have HSP. I live in Denver, CO USA. I have been to so many doctors through my insurance Kaiser! Could you find a physiotherapist in my area? I’m not sure what this doctor can do for me? I have so much to learn!
    I need Help because this disease has devastated my life!

    Thank you for any help you can give me!
    Joanna

    • Editor posted at 1:09 pm on 1 May 2018Reply

      Editor’s Note: Unfortunately we have no information on physiotherapists outside of Australia where we are based. Do you know about the SP Foundation in the USA? One of the resources they have is State Ambassadors including two in Colorado. They may be able to help you locate a suitable therapist.

      Regarding your question as to what a physiotherapist can do for you, the article that you commented on describes what they do and how they can help.

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