Stuff That Works

I've been spotting Stuff That Works pop up on my social media feeds recently and decided to investigate. This website is aiming to crowd source peoples information on treatments, and claims to be able to show greater insights with more data.

I have entered my details into this website. I am one of 174 contributors at the moment, which means that we're at the "most tried treatments" stage. Right now this doesnt seem to show anything particularly surprising, with baclofen and physiotherapy being the two most common treatments shown.

Looking further down the list comes magnesium, stretching, tizanidine, exercise, gabapentin, botox and functional electrical stimulation, but each of these have fewer than 10 reports. The interesting thing is that when you click on each of these treatments most people report that they are insignificant (there are a few exceptions to this). I also note that these treatments are for the spasticity side of things and not so much for other symptoms.

Once 500 contributors is reached there becomes another level of analysis shown, which should show the effectiveness of the treatments. With more contributors they claim to be able to influence the direction of the research, which I am interested to find out more about. 

If you wish to go in and add details for yourself you can do so here: https://www.stuffthatworks.health/hereditary-spastic-paraplegia  

There is an interesting map showing contributors, but it is not clear how the map is formed. The main block for HSP overlaps at the edge of Multiple Sclerosis, although my indicator is halfway between MS and Parkinson's. Other nearby conditions include ALS, stiff person syndrome and cerebellar ataxia. If you zoom out other large conditions fairly near include restless leg syndrome and peripheral neuropathy. I quite enjoy looking around the map!

I think the drawback to this system is that it asks you to identify one treatment (or combination of treatments) which improves your condition, which means that you have to think about how to answer this! It is interesting to note that "no significant change" is shown in a neutral face when HSP is a degenerative condition, and no significant change may be an important result. At least you can go back in and edit your answers as often as you like!

Whilst they claim to be the first crowd sourced site, I note that there are already other two other similar long established sites:

Rare Connect https://www.rareconnect.org/en/community/hereditary-spastic-paraplegia with 1154 members

Patients Like Me https://www.patientslikeme.com/conditions/hereditary-spastic-paraplegia with 233 members

Symptoms Update - Fatigue and Bladder

 A few things I've been spotting over recent weeks.

Fatigue

I am finding that I've been feeling tired more frequently. I noted this back in November (https://hspjourney.blogspot.com/2021/11/new-shoes-symptoms-update.html). Since then I've generally maintained the reduced caffeine, and I've been trying to stick with the more consistent bedtime. I'm finding screen time a challenge, and need more will-power to avoid this! It is also worth noting that I'm finding that at work the pressures of the projects I'm working on have felt high for a few months, and I know this isn't helping. Furthermore, I also realise that I'm not keeping myself as active as I have been previously. There doesn't seem to be an easy solution here, and I'm still not sure how much of my fatigue is HSP, and how much is me being busy all the time.

Bladder

Back in November I noted an alternative bladder medication, the switch from neditol (tolterodine) to oxybutynin. Overall both medications work, and I find that I am not desperately needing to go all the time. The messaging is different though. With the neditol I found that once I needed to go I needed to go to the toilet quickly, whereas with oxybutynin the need to go message builds up over a longer time, giving me more time to plan. I dont think that I am going to the toilet any more or fewer times per day, but I think it has have improved my need to go during the night, with there being less urgency there.

One other observation, and this is something which I've noted before the medication change-over. I think that flow pressure of my urine is decreasing - sometimes the flow out is just a dribble, and at other times the flow is steady, but less 'powerful' than it was in the past. This may, of course, be something to do with getting older rather than a result of HSP.

Spasticity

I think I'm spotting that moving is becoming a bit more difficult. I'm having to make more use of my upper body, especially when standing up, and I think that my speed and distance are both continuing to decrease slowly. I think that the main change is that when I'm chatting with people about my future, I'd placed my eventual need for a wheelchair to be sufficiently far in the future to be out of consequence. I had generally put the wheelchair at '5 to 10' years in the future, whereas now I feel that this timeframe is a bit too optimistic. I need to accept that this future me is getting closer, and I perhaps ought to be describing this as '5 or so' years away. I'll see how this feels and report back! I also know that the increasing need for wheelchair goes in parallel with increased need for changes to the way I cycle.