What is HSP
Research
Disclaimer:
This excellent video focuses on someone who has been diagnosed with SPG4 so it won't be applicable to everyone, considering that, so far, over 90 genes have been identified with HSP. He also mistakenly says that HSP is a rare disease that affects the lower motor neurons. However, it affects the upper motor neurons.
Time Stamps:
- 0:00- 1:00: Intro
- 1:00 – 2:30: Part 1, What is HSP
- 2:31 – 4:49: Part 11- The Genetics of HSP
- 4:50-9:47: Part 111- Jason & HSP
Here is a link to clinical trials that have been completed or are recruiting: CLICK HERE
Articles on HSP
Understanding HSP disease in brief - here
Promising treatment found for SPG5 HSP - here
SPG7 more common in Australia - here
Next generation gene testing telling a story - here
Hereditary spastic paraplegia from 1880 to 2017: an historical review - here
Chronic Pain - here
Final QA with Craig Blackstone NIH on drug trials here
Management of HSP - here
Recherce HSP publications articles - here
Clinical trials designs - here
Next generation molekylar diagnoses Italy - here
Perspective on geomics on HSP - here
Physical Therapy
Physical therapy for people diagnosed with HSP
Introduction
HSP'ers constantly have to deal with maintaining the capacities of what their body can do. Excessive physical activity can lead to fatigue, an enhanced spasticity and to general aching all over. Conversely, a lack of activity leads to muscles and tendons retraction, loss of muscular mass and, finally, to inability to work the muscles. In brief, HSP'ers have to exercise not too much, not too little: a real tricky job!
Thus to get fit and in better shape, besides the regular physiotherapy that we must continue, each individual must choose physical activity in accordance with their current abilities. That requires a clear understanding of willpower and limits.
EURO-HSP, the European HSP Federation of National Associations, herein proposes to share experience of what has worked at various local levels. From these proposals, each HSP'er can choose what fits best.
A summary of all these experiences is being compiled by EURO-HSP right now. It will be available here in a few months.
France
Denmark
The Netherlands
Orlando Physical Therapy:
This vlogger is a Neurological Physical Therapist. She focuses on people who've had a stroke but many ideas apply to us. Here is the link to her channel. Please be aware that this is not an endorsement. You might find some of the information helpful. Peruse at your own discretion.
Bob and Brad
Bob and Brad are 2 of the most famous (in their own opinion!) physical therapists on youtube. Again, this is not an endorsement. You might find some of the information helpful
Get Involved


Adam Lawrence's Blog called : A Journey to HSP/FSP:https://hspjourney.blogspot.com
European Reference Network for Rare NeurologicalDiseases (ERN-RND) http://www.ern-rnd.eu/
Eurordis: The voice of Rare Disease Patients in Europe https://www.eurordis.org/de