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I might need a mobility scooter. Moving isn't an option, and there's no downstairs storage. Options?

marcusbm

Hi. It's looking increasingly like I'll need mobility help, such as a scooter. However I live on the first floor and there is no lift. Moving isn't an option, nor is there any downstairs storage or charging options. I can't imagine being able to haul it up the steep and narrow staircase. Any options?

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janer1967

Hi there

There is no way you will be able to get a scooter up a staircase

Also with no storage downstairs I don't really know what options you would have in all honesty sorry

Ross_Alumni

Hello @marcusbm

Welcome to the community, how are you?

That sounds like quite a pickle, lifting a heavy object like that up stairs doesn't sound like an easy task. Would you have any friends, family members or other loved ones who would be able to help you with doing that as and when you needed it?

I appreciate that you probably wouldn't want to rely on them for that every time, but I thought it was worth asking

marcusbm

No, relatives aren't the helpful kind (more the 'why make your problem mine?' type). As far as friends go I've increasingly isolated myself from them with my worsening symptoms. Pretty much alone now.

Ross_Alumni

marcusbm said:

No, relatives aren't the helpful kind (more the 'why make your problem mine?' type). As far as friends go I've increasingly isolated myself from them with my worsening symptoms. Pretty much alone now.

I see, I'm sorry about that. You said your building doesn't have any downstairs storage, but is there any on site staff at all who you could ask about the situation? Perhaps they know foa room you could keep it in

marcusbm

No, it's just a flat. No staff. First time buyer type property.

Ross_Alumni

marcusbm said:

No, it's just a flat. No staff. First time buyer type property.

Ah that's a shame. I wish I had more I could suggest, I'm sorry that you're having to consider this situation. I hope others have some ideas of what you could do.

littleacorn

Do you know your neighbours especially someone on the ground floor who may have access to some outside space?

marcusbm

I'll move in a few months (pending mortgage decision). New place is also a first floor with similar access but downstairs has a garden and it's possible to negotiate adding a small shed and run a cable. But hard work to plan. That's what I meant by.starter homes, very limited options

littleacorn

Hopefully it will all work oit for you. Good luck.

Tori_Scope

Ah that sounds hopeful @marcusbm

I was going to ask about why moving wasn't an option, but it's good to hear that you might be able to move somewhere with a little outside space. Do you think you'll be able to cope in the meantime? Are there any other mobility aids you could try to tide you over?

marcusbm

Tori_Scope said:

Ah that sounds hopeful @marcusbm I was going to ask about why moving wasn't an option, but it's good to hear that you might be able to move somewhere with a little outside space. Do you think you'll be able to cope in the meantime? Are there any other mobility aids you could try to tide you over?

I've never tried a mobility aid other than crutches, however keeping my back straight exacerbates the pain and fatigue so they don't really help. Strangely when I go to a supermarket I make sure I push a trolley, an improvised mobility aid, it does really help. Any suggestions for something a bit more practical is welcome as I'm not going to haul a trolley home (and have Aldi or Tesco knocking on my door!)

littleacorn

What about those shopping bags on wheels which have a seat attached?

chiarieds

Hi @marcusbm - I wonder if a folding rollator for outdoor use might be the answer, e.g. https://www.completecareshop.co.uk/mobility-aids/rollators-and-wheeled-walkers/rollators-4-wheeled/compact-easy-rollator?sku=P64612 or

https://www.completecareshop.co.uk/mobility-aids/rollators-and-wheeled-walkers/rollators-3-wheeled/three-wheel-rollator-red?sku=M91139

There are others available from this shop, just make sure they are suitable for outdoor use, fold, & would be the correct height for you, & suitable for your weight, if you think one of these would suit. Not too heavy for you either.

marcusbm

Thanks, I'm bit too young for those designs (a 'young' 46), but it gives me ideas. I've found a few more suitable designs elsewhere. I went to uni in my 30s so have friends about 10-15 years younger, never really thought about it, just blended in (side effect of hypermobility is looking younger). It's only since my spine flared that I've stopped being able to keep up with them, in fact on some days I'm just about bed bound. It's been gradual, four years ago I was a gym regular, it's quite a shock to the system and I've kept myself distant from friends recently.

chiarieds

Hi @marcusbm - sorry, but at least you've got some (better) ideas....so long as it's not to do with a supermarket trolley! You mention hypermobility, & the side effect of looking younger. You have me wondering if you have the hypermobile type of Ehlers-Danlos Syndrome (hEDS), as do I. It's the only good thing about it in that you look younger! I qualified as a physio, & now do the exercises I used to teach. I 'managed' until I hit 40, but hope you still exercise if you can, even if it's now somewhat limited.

marcusbm

I read up on EDS after the first mention of Hypermobility Syndrome. From what I understand it's the diagnosis of the symptoms I have + dislocations and subluxations. I haven't ever dislocated since my early 20s and subluxation is uncommon. I admit I've adapted a bit to things that cause dislocations. I'm certainly on the spectrum of Type 3 EDS/hEDS, but no medical professional has ever used the term.

chiarieds

@marcusbm - we're all different, & altho I have a diagnosis of hEDS, I've never had a joint dislocation, & it's only one of my knees & wrists mainly that subluxate. If you haven't looked recently you might be interested to have a look at the EDS Support group. It's not completely up to date, but incorporates what's now known as Hypermobility Spectrum Disorder (HSD) which you may have if not EDS. See: https://www.ehlers-danlos.org/ hEDS or HSD?:

https://www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/

This is also a useful link (to nudge your GP): https://www.rcgp.org.uk/eds

Like yourself, I read up on hEDS, but, having thought myself & children had it, then being advised as to the specialist to see (he was a dermatologist who specialised in connective tissue disorders), & following correspondence & phone calls with him, my son & I eventually saw him 2 and a half years later, & our had our diagnosis confirmed.

There are so many similarities with hEDS & HSD, & the management of both is similar. I didn't get 'diagnosed' until I was 47, so there's time for you yet!

marcusbm

hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf (ehlers-danlos.com)
When I use this I get:
Criterion 1: 9/9 Beighton Score (and 4/5 additional criteria)
Criterion 2: A: 3/12 B: No C: 2/3
Criterion 3: 3/3

I've been aware of this since it was published, just can't get a GP to look beyond individual symptoms. I've been a member of that site off and on for about 7 years and have a childhood friend with more severe hEDS. As her symptoms are much more pronounced (especially Marfans signs), I haven't pushed it after a lot of push back from my first GP when I mentioned it. I also see a different GP almost every time, but it would probably go against me if I kept on asking for a different opinion. It's difficult getting through the triage wall with a GP.

chiarieds

Hi @marcusbm - I was fortunate in that my GPs were very good, & altho they didn't know what I had, they listened, & were prepared to refer myself & son to the Professor that I mention above (I forgot to say he was a geneticist as well as a dermatologist). The founder of the EDS Support group had recommended him to me; sadly he's now retired. He was quite concerned about my son having features of Marfan Syndrome with pronounced arachnodactyly (mine is far less); because of this we get yearly echocardiograms.

I gave the last link above as it was put together as a GP's toolkit to make them more aware of EDS/HSD. I wonder if that might be helpful. I used to take medical papers in to my last GP & leave them for him to read when I was beginning to think there must be an association between EDS & Chiari 1 Malformation, & he obviously did read them. He used to ask me, 'what are you bringing me this time?'

A diagnosis isn't everything, but I wanted one as all 3 of my children & all 3 of my grandchildren were affected & Chiari 1 Malformation is associated too in our family. Sometimes tho I think Drs are reluctant to diagnose as they think there's not much they can do.

From the link you gave you are certainly very hypermobile looking at the Beighton score, so surely a GP should take that seriously (I'm only 5/9, but the rest of my scores for the criteria are identical to yours). Perhaps you should take a copy of this with you when you're able to see a GP.