Mobility and Driving

I had a couple of interesting conversations recently with people who were observing me walking, making the observation that I could consider getting a blue badge. (For non UK-readers, a blue badge is a badge which allows you to legitimately park in disabled parking spaces, on some types of road where there are parking restrictions, and frequently gives you free or reduced price parking charges in car parks).

I know that I will need one of these in the future, and I considered that I dont need one right away. However, I also realise that I might be being stubborn, so I investigated the criteria for eligibility in case my stubbornness was getting in the way.

There are two levels of eligibility, a higher level will let you have one without seeking any further information, and a lower level where they will consider the application that you put forward. These are set out here: https://www.gov.uk/government/publications/blue-badge-can-i-get-one/can-i-get-a-blue-badge

I do not meet the criteria for the higher level because I am not on benefits, I am not severely sight impaired, and I have not been in the armed forces.

When considering the lower level, the closest two factors are:

• "you cannot walk without help from someone else or using mobility aids"
• "you find walking very difficult due to pain, breathlessness or the time it takes".

None of the others are relevant (at least not at the moment). I realise that insoles are a mobility aid, but it feels like I dont really meet the first of these yet, so it is more around the second one now.

These badges are issued through the local authority, so I went to see the process at my local authority. Within this, I would be in the category "Subject to further assessment: applicants with walking difficulties".

The bar is set quite high with the initial statement in this section of the form "Please note that you will only qualify for a Blue Badge under this criterion if you have an enduring (lasting for at least three years) and substantial disability which means you are unable to walk; have very considerable difficulty in walking; or are at risk of serious harm when walking."

So, HSP is enduring, but I can still walk, and I dont regard my difficulty as being considerable. I am not yet at the risk of serious harm.

After several describe your situation questions, there is a multiple choice question on the way that you walk, and I'm probably adequate at the moment. Then they ask a few "can you do this" questions, and then questions on breathlessness, pain, and balance/coordination. My mobility doesnt yet substantially tick any of these areas. 

The next questions are about mobility aids, the distance you can walk without stopping, if you can carry on after a short rest, and what sort of distance you cover in a given time. On these questions I have impact, as I'm needing to pause for a short rest every few minutes, and my distance is limited.

On reflection, I think I'm more likely to get a badge when I get to the point when I'm needing to use sticks/poles/crutches on a regular basis, which essentially means when my balance deteriorates a bit further.

Overall though, the big thing for me is the mental space for thinking about this. Applying for a blue badge is an open admission that my mobility is getting poor, and I'm not sure that I'm quite ready to do that yet. It has been said that even if I get a badge, I dont have to use it every time. Whilst this is true I will know that I have it. This is ultimately tied up with the negative societal prejudices around disability, and my reluctance to have such an obvious badge. And, yes I know that this is irrational, because the badge will soon be appropriate, and useful, and I think I'm probably already making different journey choices because of my mobility. So, its just me catching up with myself.

EuroHSP meeting in Innsbruck

At the weekend I had the pleasure to attend a EuroHSP meeting in Innsbruck. I was there with my HSP Support Group hat on, along with similar people from other European HSP groups.

I had met several people at the previous EuroHSP meeting in Vienna in 2019, and the Spatax meeting in Nice in 2019. It was also good to meet some new people as well.

It was a one day meeting. In the morning we had a bit of an update on the recently started SPG4 project which the group is running. Headlines of this project can be found on the newly updated EuroHSP website: https://www.eurohsp.eu/eurospg4. The project is looking at a potential drug route to increase the levels of spastin in cells of people with SPG4. 

There was also a great discussion about the role of the various groups. In summary the groups are there to be the voices for people with HSP. Our voices and actions help people feel less isolated, and it doesnt matter if we talk and nobody replies - the fact we are talking and people are listening is the important part. We agreed that we need to better at using our voices, and we need to find places where younger people might be listening.

The observation was made that funding is difficult - there are many projects seeking money from a limited number of sources. The observation was made that "basic science" turns money in knowledge, and then "applied science" turns the knowledge back into money. Solutions require both basic science and applied science.

In the afternoon we had two presentations from researchers. The first presentation was by Cinzia Rinaldo, and was very similar to the one she gave to the HSP Support Group earlier in the summer. I wrote about that here: https://hspjourney.blogspot.com/2023/08/2023-agm-spastin-recovery-in-hsp.html

The second presentation was by Matthias Amprosi. He is working in Innsbruck on HSP. Much of his work is on developing patient reported outcomes which can be used by clinicians and/or other HSP researchers to assess how well treatment approaches work. He has authored a paper which I need to look at in more detail in the future: Toward the Definition of Patient-Reported Outcome Measurements in Hereditary Spastic Paraplegia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9832334/. Essentially, some aspects of HSP are not captured completely in some of the clinical scales used, which makes it more challenging to measure the effectiveness of treatments and/or the progression of HSP over time.

He also noted that HSP has potential to affect the autonomic nervous system in addition to the somatic nervous system. The somatic nervous system controls our voluntary movements, and as many know control of leg movements becomes more difficult as our nerves degrade. The autonomic nervous system controls the involuntary processes, like heart rate, breathing and digestion. With some of the complex types of HSP autonomic systems are affected, and it was very interesting to hear the nervous system classified in this way.

There are more things for me to explore and write about in the future.