Outside activity

[RP0521]

Is there any help available to get me out of my home in my wheelchair

There are two steps outside my front door with no wheelchair ramp or wheelchair lift.

Thank you

[denise]

Have you had a visit from adult social care? Your occupational therapist should be the one to sort this out for you if its possible.

[RP0521]

Thank you responding.

I've had the OT and PT visit my home for over a year now and am amazed at how the desperate need to get out and about has been put to one side.

The OT refused to submit a request for an internal five step stairlift to allow me to gain access to my kitchen saying that a carer can prepare food. The OT's refusal to submit a request for a stairlift further removed my already restricted independence as I was already homebound due being resident on the second floor of a multistepped converted building with no lift.

At the time of my request I could still stand and prepare my own food when in the kitchen.

Apologies for going on, but the above is just one of a number of decisions made by so-called supportive groups, departments and association's that not only restricted available options to maintain quality of life and independence but infact actually reduced quality of life and independence.

[Cinderella]

Hi RP0521 circumvent the OT as they clearly aren't doing their job - they should try putting themselves in our shoes.

Try contacting social services at your local council and ask for a home visit from their OT to assess what access equipment they can provide for you - I have a 'suitcase' style ramp to allow me to get outside and they were looking into other types of ramp so I could use my scooter unaided. I realise these 'professionals' all work together in a way as the equipment came from the same supplier, but you may just find the council will sanction what you need.

Alternatively contact your local Member of Parliament and ask what can be done, because this is just not right that you can't get out.

What about the AV - Association Visitor - they are there for just such things and can fight on your behalf. You might be able to get a grant to help towards a stairlift for example. xx

[RP0521]

Association Visitor?

Someone to fight on my behalf or atleast alongside me would be so helpful as the process of finding what help or support is available has been a nightmare.

I have been in contact with all/the majority of the suggested local authority departments and though some have been helpful, others appear to be only focused on their own career progression.

I'm hoping the stress and fatigue are not contributing my condition progression.

We all understand there can/will be a delay in providing services, so why not think ahead.

[Cinderella]

Click on the link below to read about AV's - then call/email the mnda as suggested to see if there any in your area

• Call us: 0808 802 6262
• Email us: [email protected]

https://www.mndassociation.org/suppo...tion-visitors/

[Christopher]

RP0521 You mention that you hope that the stress and fatigue are not contributing to your condition progression. I had a lovely hospital doctor who was very tuned into that subject recently. As I lay there in hospital she went through and assessed what elements in life that could cause stress and said it was important that they were removed. Those with support networks might not realise how daunting it is for people with the condition to have to organise and chase all the help themselves. The exhaustion caused by visiting the pharmacy to find it is closed unexpectedly when trying to get your nutritional suppliments, so then having to get out and get them again is a mountain that one doesn't expect to climb.
I know the hospital ask, do you think you are finding it difficult to cope? I know its not up to them to do everything, but we also need a roadmap to follow.

[RP0521]

Hi Christopher

I agree that some but not all within supportive networks realise how daunting it is for people with our condition to organise and chase up available help.

When speaking with supportive networks I am regularly directed to speak with other supportive networks/organisations, it's been like a 9 to 5 job for months. Come 5:00/5:30 in the evening I try to relax, but the first thoughts in the morning when waking up are oh no I have to continue from where I left off yesterday.

I've had to continuously chase up my nutritional suppliments from the GP and pharmacy.

A road map and regular update of our progression from the outset would surely have been advantageous to all involved, including the NHS MND specialist.

re stress and fatigue possibly contributing to our condition? Noisy neighbours for years prior to my diagnosis have been a major problem. However, my fatigue and stress levels have rocketed from day one of diagnosis.

[Christopher]

Hi Christopher

I agree that some but not all within supportive networks realise how daunting it is for people with our condition to organise and chase up available help.

When speaking with supportive networks I am regularly directed to speak with other supportive networks/organisations, it's been like a 9 to 5 job for months. Come 5:00/5:30 in the evening I try to relax, but the first thoughts in the morning when waking up are oh no I have to continue from where I left off yesterday.

I've had to continuously chase up my nutritional suppliments from the GP and pharmacy.

A road map and regular update of our progression from the outset would surely have been advantageous to all involved, including the NHS MND specialist.

re stress and fatigue possibly contributing to our condition? Noisy neighbours for years prior to my diagnosis have been a major problem. However, my fatigue and stress levels have rocketed from day one of diagnosis.

Yes I had the neuro OTs at the hospital saying to me to chase the community neuro OTs. Now I cant remember when the community OTs are coming. As holding a phone feels like its going to tear my arm off, easier said than done. Yes now, put mobile on lap and do it on speaker.

Yes I try and think of two tasks otherwise it gets a bit daunting. It doesn't help that where I live they seem to deliver the post on one day in the week. So today (Sunday) there were three different hospital letters. I was just going to post and ask if anyone else has the problem with insomnia too. Even though I am on a very long list of medication, each one of which you would think would make me sleep, they don't seem too work anymore (co-codamol max dose, diazepam, amiltriptyline and etoricoxib).
Did have a really strange almost out of body experience when taking my nutritional suppliment last night with my meds (250 ml of Altraplen). Was almost at the call an ambulance phase, but then thought, what good would that do.
I use a big pharmacy chain which does the repeat prescriptions online and therefore they also have a direct link with the GP, so you can check all the items on the list online. Just wish there was a way that I could choose the flavours though for variety. This month I have been given two, last month, it was four. Shouldn't complain I suppose.
The funny one for me was an automated phone system recently asking for details that you had to respond to. Well after a few minutes talking I don't have much of a voice left, so I had to laugh to myself that I couldn't get through.
Remember that talking can be exhausting too. Really appreciated some family members who came to visit and after a few minutes sitting there they said "well this is fun", great when people realise how much of an effort it is for you to speak.

Neuro physio tomorrow for lunchtime fun.

Laugh of the day was seeing that on your 56th birthday they send you bowel cancer screening letter (yes literally dated on my birthday).

Sorry very random stream of thoughts.
big morning hugs to all

[Ellie]

Christopher I email everybody, it gives me a record of who said what and when, and I put all appointments into my calendar, with an automatic reminder - it has proved its worth over and over.

I also email my pharmacy with a ‘this is what I’m expecting’ list of meds. Even though I put my prescription through online, somehow the GP surgery can get it wrong 🙄

[Christopher]

Christopher I email everybody, it gives me a record of who said what and when, and I put all appointments into my calendar, with an automatic reminder - it has proved its worth over and over.

I also email my pharmacy with a ‘this is what I’m expecting’ list of meds. Even though I put my prescription through online, somehow the GP surgery can get it wrong 🙄

Thank you Ellie I had an amazing day with the physio and OT sorting the house out today. The physio also said to email her as it comes up on her phone, whereas trying to call means it has got to go through lots of people. She was such a lovely lady. Yes I must also make notes of some kind as I forget a few minutes after they have said and I am really bad at asking questions. This is why you and this site have been such a positive link in the last week since getting online to it.
Thank you Ellie

[Claireflo]

RP0521 The exhaustion caused by visiting the pharmacy to find it is closed unexpectedly when trying to get your nutritional suppliments, so then having to get out and get them again is a mountain that one doesn't expect to climb.

Will the pharmacy deliver to you? We've just arranged that for my dad as he kept going up there and they didn't have the medicine in stock and told him to go back which was a lot of effort for him.

[Christopher]

Claireflo thankyou for the suggestion. I will try and email them to see. It is a small one of a national chain (your wear them on your feet in the wet). So maybe there is a way.

[Claireflo]

Christopher my dad's chemist is just a small village one but they have a driver that delivers to all who struggle to leave the house. 🤞yours will do similar.

[Christopher]

Claireflo Yes mine is a really small one. Issue is that half the time you get there and there is a hand written note on the door. So this Saturday for example when its usually open until one. Arrived in morning and note on Window saying today we will be open from three to five. As you say, home delivery is the way.