One of my wife's cousins has muscular dystrophy. He has been playing with a 3D printer and had developed a walking stick holder for his mobility scooter. The design is a circle that has been split and stretched apart. The walking stick is put in the holder on a diagonal through the split in the circle, and then when it is in the holder is put straight up, so is entirely held by the circle. He has mounted this on to his handlebar with cable ties (OK, I dont know if handlebar is the correct term, its my bike-mind-name. I guess it could be a steering bar, steering control, etc.....)
I think this is a genius idea! He says he will publish the pattern for this, and when he does I'll edit this post with a link. In the mean time, here are a couple of pictures so you can see this. I think that this design could work well for other mobility aids as well.
This blog records my journey to Hereditary Spastic Paraplegia (HSP, also known as Familial Spastic Paraparesis or FSP). I was diagnosed with SPG4 in 2009 when my wife became pregnant with our first child. I currently wear insoles, do daily stretches and weekly Pilates. I take medication for my bladder. I tweet about HSP, RareDisease and other things @munkee74.
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Friday, 24 August 2018
Monday, 20 August 2018
Symptoms Update - Increasing fatigue (bike and walk)
A brief post with a symptoms update.
I noted earlier in the year that I've been spotting the need to sit down earlier during the day whilst walking. In the months since then this has continued to happen, and I'll now need to sit down earlier and earlier. Interestingly after I have sat down for a while I'm fine to carry on walking again. If I'm walking stop-start then this doesnt happen, its just when I have to walk continuously for a while.
The need to sit varies with how I'm feeling and how quickly I am walking. So, if I'm walking more quickly then I might need to sit down after about 20 minutes, whereas if I'm walking more slowly then, with a few pauses here and there I can keep going for upwards of an hour (as noted by FitBits auto exercise tracker, and me remembering how I'm feeling).
As noted I'm tracking steps as well using FitBit, and the school holidays are an excellent record of how many steps I've been taking on those longer walking days. There are two days of note - I spent the day exploring Bristol with my boys looking for Wallace, Gromit and Feathers (https://www.grandappeal.org.uk/trails-exhibitions/gromit-unleashed/) We had lots of stops, some travel by bus and boat, and I managed to get just over 20,000 steps. Secondly, I took my boys to London with my mum and sister. We went round the Transport Museum, and then did a bit of a walking tour including several of the touristy things (from Covent Garden to Waterloo via Trafalgar Square, Buckingham Palace, Horseguards, Whitehall, Downing Street, Big Ben and the London Eye). We did a few tube journeys and again, I just passed 20,000 steps.
Its a bit a contradiction, some days I am fine after so many steps, but other days I'm tired and I've only done 5000 steps. There doesn't seem to be any pattern with sleep as this is fairly consistent.
I also am starting to note the same thing on my bike - I can keep going for longer on my bike than I can when walking, but I am starting to find uphills more difficult, and I need to stop and rest after something like 30km (so thats something like 1.5 to 2 hours). I have done a few longer rides where I have tested this distance, so the new plan is to make sure that I have a pub/cafe stop every 30km or so!
Lastly, I'm also beginning to find it a bit more tricky to stand up from a full squat down. This might have something to do with missing a few stretches sessions out in recent weeks, but I think it is more likely to be a little more nerve breakdown and part of my HSP symptom progression.
I noted earlier in the year that I've been spotting the need to sit down earlier during the day whilst walking. In the months since then this has continued to happen, and I'll now need to sit down earlier and earlier. Interestingly after I have sat down for a while I'm fine to carry on walking again. If I'm walking stop-start then this doesnt happen, its just when I have to walk continuously for a while.
The need to sit varies with how I'm feeling and how quickly I am walking. So, if I'm walking more quickly then I might need to sit down after about 20 minutes, whereas if I'm walking more slowly then, with a few pauses here and there I can keep going for upwards of an hour (as noted by FitBits auto exercise tracker, and me remembering how I'm feeling).
As noted I'm tracking steps as well using FitBit, and the school holidays are an excellent record of how many steps I've been taking on those longer walking days. There are two days of note - I spent the day exploring Bristol with my boys looking for Wallace, Gromit and Feathers (https://www.grandappeal.org.uk/trails-exhibitions/gromit-unleashed/) We had lots of stops, some travel by bus and boat, and I managed to get just over 20,000 steps. Secondly, I took my boys to London with my mum and sister. We went round the Transport Museum, and then did a bit of a walking tour including several of the touristy things (from Covent Garden to Waterloo via Trafalgar Square, Buckingham Palace, Horseguards, Whitehall, Downing Street, Big Ben and the London Eye). We did a few tube journeys and again, I just passed 20,000 steps.
Its a bit a contradiction, some days I am fine after so many steps, but other days I'm tired and I've only done 5000 steps. There doesn't seem to be any pattern with sleep as this is fairly consistent.
I also am starting to note the same thing on my bike - I can keep going for longer on my bike than I can when walking, but I am starting to find uphills more difficult, and I need to stop and rest after something like 30km (so thats something like 1.5 to 2 hours). I have done a few longer rides where I have tested this distance, so the new plan is to make sure that I have a pub/cafe stop every 30km or so!
Lastly, I'm also beginning to find it a bit more tricky to stand up from a full squat down. This might have something to do with missing a few stretches sessions out in recent weeks, but I think it is more likely to be a little more nerve breakdown and part of my HSP symptom progression.