Neurology

Building Your Care Team and Managing Symptoms

At a Glance

While there is no cure for Autosomal Dominant Complex Spastic Paraplegia (AD-HSP), symptoms can be managed effectively with a customized care plan. Treatment focuses on reducing muscle spasticity with medications and utilizing physical therapy to maintain mobility and independence.

While there is currently no cure for Autosomal Dominant Complex Spastic Paraplegia, there are many effective ways to manage symptoms and maintain your quality of life ^[1]^[2]. Because this condition is heterogeneous (affects people differently), your treatment plan must be customized to your specific symptoms and genetic subtype ^[3]^[4].

Managing Spasticity and Gait

The primary goal of treatment is to reduce spasticity (muscle stiffness) and improve your ability to move ^[5].

Medications: Doctors often prescribe oral medications like baclofen or tizanidine to relax the muscles ^[1]^[6]. If oral medications are not enough, a surgeon can place an intrathecal baclofen pump, which delivers the medicine directly into the spinal fluid ^[7].
Botulinum Toxin Injections: Injections (commonly known as Botox) can be used to target specific, overly tight muscles in the legs to improve your walking pattern ^[1]^[6].
Surgery: In carefully selected cases, surgeries like Achilles tendon lengthening can help if tight tendons are making it difficult to keep your feet flat on the ground ^[8].

The Foundation of Care: Physical and Occupational Therapy

Physical therapy is not just an “extra”—it is the foundation of managing HSP ^[5].

Strength and Flexibility: Regular stretching is vital to prevent contractures (permanent shortening of the muscles), while strength training helps compensate for nerve-related weakness ^[5]^[9].
Balance and Gait Training: Programs often include targeted balance rehabilitation to prevent falls and maintain a safer walking stride ^[5]^[3].
Occupational Therapy (OT): An occupational therapist can teach you practical, day-to-day strategies to conserve energy and adapt your home environment, helping you maintain independence in tasks like dressing or cooking ^[3].

Your Multidisciplinary Care Team

Because “complex” HSP can affect your vision, balance, and nerves, you need a team of specialists working together ^[3]:

Neurologist: To monitor the progression of the disease and manage neurological symptoms.
Physiatrist (PM&R): A doctor who specializes in physical medicine and rehabilitation; they often manage spasticity and coordinate therapy.
Physical and Occupational Therapists: To help you maintain mobility and adapt your daily activities.
Genetic Counselor: To help you and your family understand the inheritance pattern. They can also discuss family planning options, such as Preimplantation Genetic Testing (PGT), which can ensure the mutation is not passed to future children ^[10].
Ophthalmologist or Audiologist: If your complex HSP affects your vision or hearing.

Emerging Research and Future Therapies

Scientists are working on treatments that target the actual genetic cause of HSP, rather than just the symptoms ^[11].

Gene Replacement: In laboratory models of SPG4 (the most common AD-HSP mutation), researchers have successfully replaced the faulty gene with a healthy one to stop nerve degeneration, offering hope for future clinical trials ^[11].
High-Throughput Screening: Researchers are using advanced technology to test thousands of drugs simultaneously, looking for molecules that can fix the “traffic jams” inside nerve cells (protein trafficking defects) associated with complex HSP ^[12].
Investigational Neuromodulation: Therapies like Repetitive Transcranial Magnetic Stimulation (rTMS), which uses magnetic pulses to stimulate the brain, are being investigated in clinical studies to see if they can help reduce leg stiffness, though they are not yet part of standard clinical care ^[13]^[9].

While these treatments are mostly in the research phase, they represent a significant shift toward “precision medicine” for HSP ^[14]^[12].

Common questions in this guide

How is leg stiffness and spasticity treated in AD-HSP?

Spasticity is commonly managed with oral medications like baclofen or tizanidine to relax stiff muscles. If these aren't effective enough, your doctor might recommend targeted botulinum toxin injections, an intrathecal baclofen pump, or even surgery to lengthen tight tendons.

Why is physical therapy important for hereditary spastic paraplegia?

Physical therapy is the cornerstone of managing HSP. Regular stretching prevents permanent muscle shortening, while strength and balance training help compensate for nerve weakness and prevent falls.

Which doctors should be on my complex HSP care team?

A comprehensive team usually includes a neurologist to monitor the disease and a physiatrist to manage spasticity. You will also work closely with physical and occupational therapists, and potentially genetic counselors, ophthalmologists, or audiologists depending on your specific symptoms.

Are there any treatments that fix the genetic cause of HSP?

Current clinical care focuses on managing symptoms, but researchers are working on therapies that target the underlying genetics. Scientists are studying gene replacement for specific mutations like SPG4, though these are still in the laboratory or early trial phases.

Curated prompts to bring to your next appointment.

1.Who will be the 'lead' physician on my multidisciplinary team to coordinate all these different specialists?
2.Am I a candidate for botulinum toxin injections or oral medications to help manage my leg stiffness?
3.What specific physical or occupational therapy strategies should I focus on to maintain my balance and independence at home?
4.Given my specific genetic subtype, are there any clinical trials targeting my exact gene mutation?
5.When should we consider surgical options like tendon lengthening or an intrathecal baclofen pump?

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References (14)

1
Characteristics of Changes in Intrathecal Baclofen Dosage over Time due to Causative Disease.
Kimoto Y, Oshino S, Tani N, et al.
Neurologia medico-chirurgica 2023; (63(12)):535-541 doi:10.2176/jns-nmc.2022-0359.
PMID: 37743509
2
Individual perception of environmental factors that influence lower limbs spasticity in inherited spastic paraparesis.
Lallemant-Dudek P, Parodi L, Coarelli G, et al.
Annals of physical and rehabilitation medicine 2023; (66(6)):101732 doi:10.1016/j.rehab.2023.101732.
PMID: 37028193
3
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
4
Cognitive dysfunction in hereditary spastic paraplegias and other motor neuron disorders.
Faber I, Branco LMT, França Júnior MC
Dementia & neuropsychologia 2016; (10(4)):276-279 doi:10.1590/s1980-5764-2016dn1004004.
PMID: 29213469
5
The therapeutic effects of physical treatment for patients with hereditary spastic paraplegia: a narrative review.
Di Ludovico A, Ciarelli F, La Bella S, et al.
Frontiers in neurology 2023; (14()):1292527 doi:10.3389/fneur.2023.1292527.
PMID: 38093754
6
The Puzzle of Hereditary Spastic Paraplegia: From Epidemiology to Treatment.
Meyyazhagan A, Kuchi Bhotla H, Pappuswamy M, Orlacchio A
International journal of molecular sciences 2022; (23(14)) doi:10.3390/ijms23147665.
PMID: 35887006
7
Online monitoring of focal spasticity treatment with botulinum toxin in people with chronic stroke or hereditary spastic paraplegia: a feasibility study.
Kerstens HCJW, Nijkrake MJ, De Swart BJM, et al.
Journal of rehabilitation medicine 2023; (55()):jrm00383 doi:10.2340/jrm.v55.6572.
PMID: 37073790
8
Improved Gait Capacity after Bilateral Achilles Tendon Lengthening for Irreducible Pes Equinus Due to Hereditary Spastic Paraplegia: a Case Report.
Nonnekes J, Keijsers N, Witteveen A, Geurts A
Journal of rehabilitation medicine. Clinical communications 2021; (4()):1000059 doi:10.2340/20030711-1000059.
PMID: 34276903
9
The Effect of Repetitive Transcranial Magnetic Stimulation on Motor Symptoms in Hereditary Spastic Paraplegia.
Antczak J, Pera J, Dąbroś M, et al.
Neural plasticity 2019; (2019()):7638675 doi:10.1155/2019/7638675.
PMID: 31214256
10
Association of an insertion mutation in PRRT2 with hereditary spastic paraplegia accompanied by polyneuropathy.
Wang Z, Dong H, Ji X, et al.
Journal of clinical laboratory analysis 2021; (35(6)):e23772 doi:10.1002/jcla.23772.
PMID: 33826176
11
Intracerebroventricular SPAST-AAV9 gene therapy prevents manifestation of symptoms in a mouse model of SPG4 hereditary spastic paraplegia.
Piermarini E, Guha S, Qiang L, et al.
Molecular therapy : the journal of the American Society of Gene Therapy 2026; (34(3)):1729-1742 doi:10.1016/j.ymthe.2025.11.029.
PMID: 41311060
12
High-content screening identifies a small molecule that restores AP-4-dependent protein trafficking in neuronal models of AP-4-associated hereditary spastic paraplegia.
Saffari A, Brechmann B, Böger C, et al.
Nature communications 2024; (15(1)):584 doi:10.1038/s41467-023-44264-1.
PMID: 38233389
13
A Randomized Controlled Trial of the Effect of Repetitive Transcranial Magnetic Stimulation of the Motor Cortex on Lower Extremity Spasticity in Hereditary Spastic Paraplegia.
Bastani PB, Kordjazi M, Oveisgharan S, Abdi S
Journal of clinical neurophysiology : official publication of the American Electroencephalographic Society 2023; (40(2)):173-179 doi:10.1097/WNP.0000000000000874.
PMID: 34817445
14
Overcoming the divide between ataxias and spastic paraplegias: Shared phenotypes, genes, and pathways.
Synofzik M, Schüle R
Movement disorders : official journal of the Movement Disorder Society 2017; (32(3)):332-345 doi:10.1002/mds.26944.
PMID: 28195350

This page provides educational information on managing AD-HSP symptoms and building a care team. Always consult your neurologist or physiatrist before starting new treatments or altering your therapy routine.

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