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PubMed This is a summary of 13 peer-reviewed journal articles Updated
Neurology

Daily Life, Monitoring, and Fall Prevention

At a Glance

Living with pure AD-HSP requires proactive management to maintain mobility and quality of life. Key strategies include using assistive devices like AFOs to prevent falls, tracking progression with the SPRS scale, daily stretching, and addressing the psychological impacts of the condition.

Living with pure AD-HSP is about adaptively managing a slow progression to maintain your quality of life [1][2].

Proactive Fall Prevention

Falls are a primary concern due to leg stiffness and reduced balance [3].

  • Assistive Devices: Ankle-Foot Orthoses (AFOs) keep your foot from catching on the floor [4]. Trekking Poles or Rollators provide extra stability in public spaces [5].
  • Targeted Training: Interventions like gait-adaptability training help you walk safely on changing surfaces [6].

Monitoring Your Progress

Monitoring HSP involves using standardized tools over decades.

  • The SPRS Scale: The Spastic Paraplegia Rating Scale is the tool your neurologist uses to objectively measure disease severity [7][8].
  • Annual Check-ups: A yearly visit to update your SPRS score, check for new symptoms, and adjust orthotics is standard [9][5].

Managing the Psychological Impact

A slowly progressive condition carries a unique psychological weight. Stress can temporarily make muscle stiffness feel worse [10][11]. Connecting with patient advocacy groups or a therapist can help you navigate the “long-haul” nature of this diagnosis [2][12].

Daily Management Checklist

  1. Daily Stretching: Consistent stretching of the calves and thighs is essential [13].
  2. Footwear: Finding shoes that accommodate orthotics (like AFOs) and provide a wide base of support is crucial for daily comfort and stability [4].
  3. Hydration & Bladder Care: Discuss urinary urgency early with your doctor to prevent complications [9].
  4. Home Safety: Remove trip hazards like loose rugs and ensure high-traffic areas are well-lit [5].
  5. Energy Conservation: Walking with HSP requires more effort. Pacing your activities prevents excessive fatigue [4].

Return to Home.

Common questions in this guide

What is the Spastic Paraplegia Rating Scale (SPRS)?
Neurologists use the Spastic Paraplegia Rating Scale (SPRS) as an objective tool to measure the severity of your symptoms. During annual check-ups, your doctor will update your score to monitor how the disease is progressing over time.
How can I prevent falls with AD-HSP?
You can reduce fall risk by using assistive devices like Ankle-Foot Orthoses (AFOs) to prevent your foot from catching, or trekking poles for extra stability. Additionally, removing home trip hazards and participating in gait-adaptability training can help you walk more safely.
Can stress affect my AD-HSP symptoms?
Yes, psychological stress can temporarily make muscle stiffness feel worse. Working with a mental health professional or joining a patient advocacy group can help you manage the emotional toll of a progressive neurological diagnosis.
What should my daily management routine look like with AD-HSP?
A daily routine should include consistent stretching of the calves and thighs, pacing your activities to conserve energy, and wearing shoes that accommodate your orthotics. You should also monitor symptoms like urinary urgency and discuss them early with your doctor.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What is my current score on the Spastic Paraplegia Rating Scale (SPRS), and how has it changed since my last visit?
  2. 2.Based on my gait analysis, which specific assistive devices (like AFOs or trekking poles) would best reduce my risk of falling?
  3. 3.Can you refer me to a mental health professional who has experience working with progressive neurological conditions?

Questions For You

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References

References (13)
  1. 1

    Clinical and molecular characterization of a large cohort of childhood onset hereditary spastic paraplegias.

    Giordani GM, Diniz F, Fussiger H, et al.

    Scientific reports 2021; (11(1)):22248 doi:10.1038/s41598-021-01635-2.

    PMID: 34782662
  2. 2

    Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia.

    Kerstens HCJW, Satink T, Nijkrake MJ, et al.

    Disability and rehabilitation 2020; (42(26)):3744-3751 doi:10.1080/09638288.2019.1610084.

    PMID: 31079503
  3. 3

    Are clinical tests and biomechanical measures of gait stability able to differentiate fallers from non-fallers in hereditary spastic paraplegia?

    van de Venis L, Ormiston J, Bruijn S, et al.

    Gait & posture 2024; (114()):270-276 doi:10.1016/j.gaitpost.2024.10.017.

    PMID: 39437479
  4. 4

    Is intrathecal baclofen an effective treatment for children with hereditary spastic paraparesis?

    Pointon RS, Whelan H, Raza R, Lodh R

    Archives of disease in childhood 2020; (105(10)):1016-1018 doi:10.1136/archdischild-2020-319878.

    PMID: 32732319
  5. 5

    Pathophysiology, diagnostic work-up and management of balance impairments and falls in patients with hereditary spastic paraplegia.

    Nonnekes J, van Lith B, van de Warrenburg BP, et al.

    Journal of rehabilitation medicine 2017; (49(5)):369-377 doi:10.2340/16501977-2227.

    PMID: 28471471
  6. 6

    Improving gait adaptability in patients with hereditary spastic paraplegia (Move-HSP): study protocol for a randomized controlled trial.

    van de Venis L, van de Warrenburg BPC, Weerdesteyn V, et al.

    Trials 2021; (22(1)):32 doi:10.1186/s13063-020-04932-9.

    PMID: 33413555
  7. 7

    MDSGene Systematic Review of Common Forms of Dominant Hereditary Spastic Paraplegia: Novel Insights.

    Kang C, Rajalingam R, Walls Z, et al.

    Movement disorders clinical practice 2026; doi:10.1002/mdc3.70559.

    PMID: 41734945
  8. 8

    Natural history in hereditary spastic paraplegias: real-world data from an Austrian cohort.

    Amprosi M, Indelicato E, Eigentler A, et al.

    Journal of neurology 2026; (273(2)):97.

    PMID: 41586880
  9. 9

    The hereditary spastic paraplegias.

    Fink JK

    Handbook of clinical neurology 2023; (196()):59-88 doi:10.1016/B978-0-323-98817-9.00022-3.

    PMID: 37620092
  10. 10

    COVID-19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia.

    van de Venis L, van de Warrenburg BPC, Weerdesteyn V, et al.

    Journal of neurology 2020; (267(12)):3462-3464 doi:10.1007/s00415-020-10016-0.

    PMID: 32638108
  11. 11

    Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands.

    van Lith BJH, Kerstens HCJW, van den Bemd LAC, et al.

    Orphanet journal of rare diseases 2020; (15(1)):64 doi:10.1186/s13023-020-1338-4.

    PMID: 32131864
  12. 12

    Health-Related Quality of Life in Rare Forms of Childhood-Onset Hereditary Spastic Paraplegia.

    Schmidt HJD, Battaglia N, Rong J, et al.

    Annals of clinical and translational neurology 2026; (13(1)):193-199 doi:10.1002/acn3.70244.

    PMID: 41199121
  13. 13

    Functional effects of botulinum toxin type A in the hip adductors and subsequent stretching in patients with hereditary spastic paraplegia.

    van Lith BJH, den Boer J, van de Warrenburg BPC, et al.

    Journal of rehabilitation medicine 2019; (51(6)):434-441 doi:10.2340/16501977-2556.

    PMID: 30968942

This page provides daily management and fall prevention strategies for AD-HSP for educational purposes only. Always consult your neurologist or physical therapist before starting new exercises or using assistive devices.

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