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Thread: Fora tickle advice required for several issues

  1. #1
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    Fora tickle advice required for several issues

    As stated before I live alone and am very isolated. I am struggling to walk safely with crutches and/or a 4 wheeled walking frame. Even with the frame I struggle to feel safe on anything other than level surfaces e.g steps and slopes are proving very difficult, even tiny steps. My driving feels totally normal and has been key to maintaining my independence. I want to keep my car for as long as possible before maybe converting to a motability vehicle. My home still hasn't had the building work to make it wheelchair accessible.So;-
    Q1) I use my car to do my weekly food shop at a local supermarket. I walk with crutches to access a trolley and that then acts as a walking frame. After recent experiences I am afraid that I will now not be able to walk safely to the trolley using crutches. If instead I get my walking frame out of the boot and use that, I then will not be able to access and push the trolley. I know I could maybe shop online but my weekly food shop is now one of the few times I get out and about.
    Q2) when I fill my car with diesel at the petrol station, I use my crutches to get to the tills to make the payment. Again I am worried I won't be able to do that anymore. Getting my walking frame out and using that doesn't feel like an option at inevitably busy petrol stations. I know that at some pumps you can pay at the pump but I tried that last time and it didn't work. So I feel I am always going to have to be able to walk to the tills. But how?
    Q3) again at petrol stations I am concerned that I can't bend down safely to enable me to check and top up my tyre pressures. How do I get that done?
    Q4) my cars service and MOT is coming soon. But I am concerned about how I will walk to the offices etc and how I will get back home whilst the work is ongoing and then back to the garage on completion.

    So, basically whilst I can still drive safely I can't walk safely on anything other than simple flat and even surfaces ( like inside my house and any steps and stairs have lots of handrails). For example ,with these concerns, for my recent hospital appointments I have asked for ambulances to take me. And they then take me in a wheelchair.
    I am sorry if this message is long.
    Last edited by panniertank; 9th October 2019 at 16:21. Reason: Uggh I don't know why the title says fora tickle . I didn't type that!! Sorry

  2. #2
    Forum Member Gillette's Avatar
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    Hi Panniertank

    Some quick answers for you:

    Q1) As you are losing your confidence in walking, do your shopping online and have a different trip out, instead, which feels safer for you. Do you go to your local MNDA meeting. At least you would meet people who understand your worries and concerns and may be able to make other suggestions.

    Q2) How about ringing round some local petrol stations and asking how they might be able to help you? Again, your local MNDA meeting might have some local knowledge.

    Q3) Instead of doing it at a petrol station, try using a local tyre company (independent ones are great). It may cost a bit but better that than injuring yourself!

    Q4) Again, ring round local garages. Many garages in my area will either collect and deliver your car, or will drive you home and you up. Failing that, why not use a taxi firm.
    Dina

    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Lynne K's Avatar
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    On a recent shopping trip I noticed a sign by the petrol pumps that said something to the effect of "if you need help in filling up ring for assistance." A contact number was given. I don't know how long you'd have to wait for help. But in theory you wouldn't have to get out of your car. We've been to Tesco, Asda, Morrisons and Booths and I can't remember in which one I noticed the sign. But a call to your local store ought to answer if they have this service. Good luck Panniertank. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
    Forum Member Barry52's Avatar
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    Hi PT,

    I have similar issues but there is a solution. Downloaded the app on your phone for assistance when filling your car with fuel https://www.shell.co.uk/motorist/dis...l-service.html
    I also use pay at the pump because I can manage to get out and hold onto my car to refuel. My new vehicle has a filler cap on the nearside so I pop my boot lid and use the opening for balance. I get some strange looks and the occasional frustrated driver behind me but I don’t give a s**t.

    When it comes to shopping I can use online but I like to see what I’m buying so I have a few supermarkets where I can park next to the trolley bay and use this as my “walker”. I always ask for packing of my bags.

    I hope you find a solution to maintain your independence.

    Barry
    Iím going to do this even if it kills me!

  5. #5
    Forum Member MNDConnect's Avatar
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    Hello panniertank

    I understand how important it is to be able to get out and about, especially if you are already feeling isolated.

    I would encourage you to think about going to a local MND meeting, as I am sure you would get lots of support and meet people who understand some of the issues you are having.

    Many of the larger supermarkets are happy to make a member of staff available to assist you. However, most require you contact the customer services desk in advance of your visit, so they are able to guarantee that someone is able to assist you.

    An increasing number of larger stores also have mobility scooters available for customers to borrow, once again the stores do prefer you request these before you visit, in order for them to make sure one is available and bring it to where you are parked.

    Larger manned petrol stations often have at least one pump with a call button you can press for assistance or another method of communicating that you require assistance, without you having to walk away from your vehicle and into the shop.

    There is a "fuelservice" which allows you to download a mobile phone app, to identify which petrol stations you should go to for assistance. The app tells you which nearby stations have assistants available who will help with refuelling your car. They call them up and ask if they can help in the next 30 minutes. The app then tells the petrol station that you have arrived and informs you how many minutes they are likely to be. You can find more information on this at https://fuelservice.org/en/

    Local garages or tyre centres are often happy to check tyre pressure for free and Halfords also provide a free tyre checking service.

    Lots garages offer a delivery and collection service for a MOT or service, especially if you explain to why you require this service.

    Another source of useful information is the Disabled Motoring UK website info@disabledmotoring.org. Disabled Motoring UK has been working with a number of different companies to try to find solution to problems with refuelling for disabled motorists. One that they are promoting is by Contacta - who have devised a handy alert system called MyHailo.

    Drivers have a small fob in their vehicle which they use to summon help and the petrol station has a receiver. Once the system is activated by the attendant will press a button so the customer knows help is on the way and as soon as they can they are there to help. You can purchase a MyHailo key Fob in the Disabled Motoring UK shop at https://www.disabledmotoring.org/sho...roduct/myhailo

    Hope you find this information useful.

    Andrea

  6. #6
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    Hello, thank you all for your interesting proposals. I will think about them and read the website links you propose etc.
    Kind regards,
    PT
    P.s I just phoned my local supermarket and they said go to the customer service desk and they will get me a trolley and store my walking frame safely. Also on their website it states to sound your horn or turn on your hazard lights if you are disabled and need assistance at the petrol pump.
    Last edited by panniertank; 10th October 2019 at 15:09.

  7. #7
    Forum Member nunhead_man's Avatar
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    Hello panniertank

    Sounds like you have some good advice there!

    I am not sure whether it has been discussed with you before, but you may know that you need to tell the Driver and Vehicle Licensing Authority or whoever they are now called if you are limited in any way in your driving capacity.

    As I am arm onset I may have more difficulties than you do so forgive me, if I mention that I am now in a three-year driving licence
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  8. #8
    Forum Member Terry's Avatar
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    Quote Originally Posted by panniertank View Post
    Also on their website it states to sound your horn or turn on your hazard lights if you are disabled and need assistance at the petrol pump.
    I can imagine that will wind up a few people and the staff won't understand.

    Probably best to get a phone number and warn them before hand, also if you are stuck at a pump, you can ring someone.

    I have got assistance at a couple of supermarket petrol stations years ago.

    Love Terry

  9. #9
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    I am not sure whether it has been discussed with you before, but you may know that you need to tell the Driver and Vehicle Licensing Authority or whoever they are now called if you are limited in any way in your driving capacity.
    As I am arm onset I may have more difficulties than you do so forgive me, if I mention that I am now in a three-year driving licence[/QUOTE]

    When I got diagnosed with MND , informing the DVLA was one of the first things I had to do ( there are many illnesses you have to legally inform them about ). They responded that my licence is also restricted for 3 years. I know I have to inform them if my driving abilities change. At the moment my driving is the only thing in my life that feels totally normal and is key to maintaining my independence and getting out of the house.

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