Anyone else with Spinal Stenosis use mobility aids?

CountryMimi

@0898 I'm so sorry to hear you've stopped going out 💔 probably doesn't sound like the most appealing solution, but have you thought about trying an access bus if there's one local to you? 

I stay in most days, but thankfully with my mum's help and being able to drive I get out at least once a week

Oh gosh I'm so sorry, it can be such a debilatating illness can't it 😞 have you thought about getting a stick for around the house? Or do you not feel stable enough? 

CountryMimi

@MarieBarl thank you 🥰 I've been doing quite well with the self propelling on flat surfaces, hills are a different challenge though 😅

I've thought about swimming occasionally as it's such a good resistance based exercise, but I'm worried about slipping on the pool side (mainly because my balance isn't the best) 

CountryMimi

@petur64 oh gosh, I'm so sorry to hear that 😞 what a rubbish time for you!

I find it's brilliant for my arms 😂 I have started to realise that 9 times out of 10, people are so so kind and willing to help out, but it's just the small minority that are idiots and make you feel horrendous. Unfortunately I had a rather unpleasant experience last week where I just wanted to hide away. I'd borrowed one of the scooters at the supermarket whilst doing some shopping. One guy turned around and looked at me, seeming to find it rather amusing that I'm a young person (32) and using a mobility scooter. I felt like retaliating and telling him that he wouldn't be laughing if he was in my shoes. It just gobsmacks me how uneducated some people are when it comes to being kind and compassionate.

What did give me a smile today was that a little girl who was 3/4ish saw me with my crutches and said "Mummy, that lady can't walk properly", she proceeded to walk away and made up her own little song "Mum-my that lady can't walk prop-er-ly" and a few weeks ago, another little girl saw me and said "I really wish I had crutches" to her mum 😂😂😂 I do get quite a lot of looks from kiddos and it's more curiosity than anything. But adults definitely know better!

I'm so glad that you were able to have a nice time at your daughter's wedding and able to move about!

I hope you manage to have your hip and knee ops soon and that everything goes as well as it can go!

petur64

@CountryMimi, thank you! Im having very simular experiences as yourself.  I also think all the time there are people who have much more severe disabilities then myself.
I understand children having a good look, they are curious. Adults;just ignorant!
Ive also tried, when someone is clearly ignorant, asking them for help! i.e. my blue badge "oh could you please help me getting my wheelchair from the boot" or in the supermarket, the stuff on the top shelf!

CountryMimi

@petur64 it's awful isn't it! I feel like some people can't get past the idea that it's not a one size fits all when it comes to disabilities.

Curious to know what their response is? Do they help you at all? I really hope so.

I'm just wondering if you've had any experience with this. My stenosis is in the lumbar spine, but for a few months now I've had a bruising like feeling in my thoracic spine. My mum has checked and there's no visible exterior bruising. I did have a look on google and apparently it can be a symptom of a slipped disc. Today I started with pain that feels like it's radiating from my hip down into my left leg (thigh) Is that sciatica? 

petur64

@CountryMimi hi, most people are really helpfull. It's the odd ones i do come across
I dont have medical knowledge so these are just my experiences. My whole lumbar is affected, a surgeon explained its L1 to L5 +L5 S1 and yes i have pain down both legs and upwards in my back caused by the nerves, even when i rest i have numbness, I think it affects digestion aswell but I dont have anyone to ask. yes I have had sciatica previous to my present spine problems. Are you able to easily speak to any NHS doctor or nurse? Like most people now I can't speak to my GP .

CountryMimi

@petur64 I'm so glad it's been mostly positive!

Ahh gosh sorry about the numbness! I don't get numbness, but I do have a lot of nerve pain.

Oh that's really interesting that you mention about digestion! I've had problems with digestion recently - I had issues with my gall bladder a few years ago and it never got removed, but other than little niggles, I haven't had much bother with it since but then out of nowhere I had a gall stones attack last week - it wasn't my worst, but it was enough to make me feel uncomfortable. I've been having quite a lot of acid reflux recently as well, I wonder if that could be something to do with it? 🤔

I had sciatica when the disc initially shattered in my back, but it was completely different to what I experienced last week and in the opposite leg / side.

I have a phone call due with physio tomorrow, so I could ask him

MarieBarl

@CountryMimi I do get quite a lot of looks from kiddos and it's more curiosity than anything. But adults definitely know better!

My friend's son was shocked the first time he ever saw me moving. 'Oh, you're Big!,' he said. He was 3.

He meant tall, although large would also apply. Children rarely mean offence, they learn that either from their parents or in the playground.

When I was finally seated again, he commented, 'that's better now you can be little like me  again.'

petur64

Ahh! Children are just curious, inquisitive. My experience is when im out, children very rarely notice the wheelchair very much.

CountryMimi

@MarieBarl

I've worked as a nanny and in nurseries definitely know that the majority of the time they don't mean to upset anyone 😃

I actually went to visit my old nursery the other week and one of the little'ens I used to look after who is still there came up to me and said "will you ever be able to walk without those? You use those because you can't walk" 🥰 it was so sweet, it was like she was processing it all in her head

Bless you 🥰 I completely empathise as I have also been 'bigger' - thankfully I've managed to lose 4 stone this last year, but I do struggle with my weight! 

You are completely right, sometimes the things that come out of their mouths is learned behavior. I grew up with disabilities, cousins in my family and a little girl at my school who was my sister's best friend was a very poorly little girl and sadly died when she was about 6 years old so I think for me I had that awareness.

It is sad that adults have that negative reaction though

@petur64

That really surprises me - I don't know about you, but I'm 32 so I guess people might expect that I wouldn't really need a wheelchair.

JeffB

Thank you for sharing your experience. I'm so sorry you are in such pain. As soon as I saw the first few words of your post it resonated with me as I'm experiencing the pain of Spinal Stenosis too, and like you I am thinking about getting a wheelchair so that at the very least I can have the independence just as you described. Like you I asked for crutches to at least enable me to stand supported, the only problem is with each step I try to take the pain increases.. Its got to the point where I am considering buying a wheelchair or wondering whether that's something I should ask the GP.. I'm taking Pregablin & the highest dose of painkillers which means I cannot drive at the moment yet I really want to be able to go out to places with my wife and children. I was wondering if you have had Nerve Blocker injections to ease your pain. The way I'm thinking is that if we have the self propelling wheelchair we would at least be able to go out and about and not have to think about the pain, in my case unfortunately sitting is the most comfortable position for me. Standing and walking are very painful, lying in bed is also uncomfortable especially trying to roll to sleep on my side. I'm relying on the painkillers to lessen the discomfort. I do hope you find some comfort and receive the treatment that may help is some way.. Thank you for sharing, best wishes. JeffB

CountryMimi

JeffB said:

Thank you for sharing your experience. I'm so sorry you are in such pain. As soon as I saw the first few words of your post it resonated with me as I'm experiencing the pain of Spinal Stenosis too, and like you I am thinking about getting a wheelchair so that at the very least I can have the independence just as you described. Like you I asked for crutches to at least enable me to stand supported, the only problem is with each step I try to take the pain increases.. Its got to the point where I am considering buying a wheelchair or wondering whether that's something I should ask the GP.. I'm taking Pregablin & the highest dose of painkillers which means I cannot drive at the moment yet I really want to be able to go out to places with my wife and children. I was wondering if you have had Nerve Blocker injections to ease your pain. The way I'm thinking is that if we have the self propelling wheelchair we would at least be able to go out and about and not have to think about the pain, in my case unfortunately sitting is the most comfortable position for me. Standing and walking are very painful, lying in bed is also uncomfortable especially trying to roll to sleep on my side. I'm relying on the painkillers to lessen the discomfort. I do hope you find some comfort and receive the treatment that may help is some way.. Thank you for sharing, best wishes. JeffB

Hi Jeff, apologies for the late reply. I haven't been on here for months, so I'm glad I've logged in today to see your response!

Oh I am so sorry you're suffering too. It is so debilitating at times isn't it! I am still using my crutches, but decided to invest in some of the Ossenberg crutches last year - they were really reasonable in price and on the odd occasion when I use my NHS crutches, I can completely see the difference - they're far more comfortable and don't make that awful sound - although having said that, it's really helpful for when my Mum & I lose each other in a shop as she can hear me 😂

I also bought an Excel G-Logic wheelchair - not sure where you're located, but if you're near West Yorkshire I can highly recommend Brook Miller Mobility! Can't remember the name of the guy who was part of customer care, but he was brilliant! Didn't rush me, was very supportive - ordered the wheelchair on a Thursday I think and it was in the next day.

I'm so sorry you're unable to drive at the minute with the Pregabalin and that it's affecting your freedom and independence 😔 I was prescribed Pregabalin a while back, but I've had negative side effects with some medication, so they took me off them and unfortunately nothing is really working anymore.

Yeah, I completely agree! My physiotherapist didn't think there was a need for one, but it is really helpful in some situations. I will be completely honest though and tell you I do struggle if I'm not on a flat surface, but I had multiple concerns about getting a powered wheelchair - the car I had at the time was only small and having checked with customer services when I bought my wheelchair, there wasn't a hoist that could be fitted to my car - so had to rule out that option as I couldn't lift and neither can my Mum. Then there was the issue of having anything that I could get into the house we were living in at that time as it was up some steps, so whether it was getting the aid into the house or the battery it was an issue. I would love to be able to get a power assist such as smartdrive, but unable to afford that at this moment in time. I can completely understand the impact it's having on you.

I haven't had any nerve blocker injections yet, but am under pain management, so might be something they offer at some point - currently under psychologist as I struggle with various aspects of my MH in various ways, so I think they're trying to take more of a holistic approach at this point.

I hope you are able to find something that helps soon and at least you can get some independence back. Have you got a lot of support from medics?