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Thread: Hello Everyone- Advice Needed Please.

  1. #1
    Forum Member
    Join Date
    Mar 2017

    Hello Everyone- Advice Needed Please.

    Hi All,

    I've been a lurker on this forum for a while but thought it was time to introduce myself. This forum seems to be the right place for us as It's not all doom and gloom and seems to offer positive and practical advice.

    My husband was diagnosed in February this year at the age of 54 with limb-onset mnd. It started with fasiculations in his arms in September which moved to his legs and is now all over and quite severe. He also had loss of power in his legs, but as he had a physical job and was also training for an endurance cycling event regularly riding for 100 miles he just put it down to getting older.

    He seems to be progressing quite quickly, he now has problems walking short distances and with his balance and also struggles with his hands/arms when dressing/cutting etc. He is able to ride an electric bike for 10-15 miles although he has to have help getting on and off.
    We have been quite pro-active in the beginning, as my husband was self employed he decided to finish work immediately as he felt he could not cope with the physical and practical demands. Because of this we had to go down the benefits route, and during the first three months (with the aid of a DS1500) we succesfully claimed full PIP, ESA, council tax relief for disability and also have a car under the motability scheme.
    We are doing OK at the moment, most days we are quite positive and try and do as much as we can in terms of travel, getting out etc. we do have the odd day however when things get on top of us and we have a bit of a meltdown. We also have fantastic support from family and friends which helps a lot.

    We are after a bit of advice at the moment which I would be grateful for any tips.

    Mobility: At the moment my hubbie uses a rollator indoors, he has problems with his balance and this helps. He also has a mobilty scooter for longer distances. We are stuck as to what to do for short trips as you cannot take a mobilty scooter into many places, and also we are struggling putting it in and out of the car boot. A wheelchair would be the obvious solution but he is a bit resistant at the moment to being pushed, and his arms are not strong enough to propel it himself. The ideal thing would be a portable battery wheelchair but I don't know if such a things exists. We know he will have to have a power chair later on, but looking to see if there is an alternative in the meantime.

    Breathing: During our first clinic appointment in April my hubbies breathing test results, both in and out were very low at around 54% as this was his first test and he was not suffering from breathlessness etc they put it down to lack of technique. In our last clinic appointment in July this was still the same, although his breathing is fine, he is not short of breath, sleeps well and has no headaches. We are a bit stumped at this.

    Apologies for the long-winded post but as soon as I started writing the flood gates seemed to open.

    Many Thanks

  2. #2
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hello and welcome to you and your husband eurocamper.

    I know you will get lots of support and advice from our members on this forum. You are well versed regarding the benefits available and your comments about the occasional meltdown echo with all of us, so if you want to have a rant on here we will listen. As a person living with MND, your husband will feel frustrated and as a carer you will feel stressed so please use the forum as a means of release.

    On the practical side I have recently been investigating lightweight power wheelchairs as I have a scooter but as you point out it is not ideal for access everywhere. A company imports a range of lightweight wheelchairs in the UK and you can find more information here

    Your husband will be entitled to a wheelchair but it will not be suitable for transportation by car as they are very heavy.

    Best wishes,
    Iím going to do this even if it kills me!

  3. #3
    Forum Member
    Join Date
    Mar 2017
    Hi Barry

    Thank you so much for your advice and best wishes.

  4. #4
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Euro & welcome to both you and your husband.

    Just on the breathing issue; do you know what test gave the 54% reading? FVC maybe? Some tests can be down to technique, but generally not spirometry (FVC/FEV1 etc if you were given the results), but it can be negatively impacted if hubby's lip seal is weak.

    On the plus side, the figure of 54% hasn't changed and he's comfortable. If that value is his FVC figure, he (& you) should probably start getting used to the idea of using non-invasive ventilation, known as a BiPAP machine; I mean by learning about it.
    A good website is

    I know this is a scary thought and not what you want to hear, but early use of one increases both longevity and quality of life. Using a BiPAP should be seen as taking a positive step. I'm NOT saying hubby needs one right away, but some people need time to get their heads around new things... Fwiw, my FVC is borderline 20% and I don't get headaches if I don't use my BiPAP.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member
    Join Date
    Sep 2012
    Welcome Eurocamper

    Sorry for your husband's diagnosis. You have come to the right place for great advice, support, knowledge, understanding and friendship, by people that truly understand what you, and your family are experiencing.

    All the best to you in the days ahead.


  6. #6
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Eurocamper;

    I used to have a smallish scooter and got brackets made up for my rollator to hang on the back of it.

    You can also look at these cheaper and probably not so good power folding wheelchairs for just over a £1000:-

    Best wishes, Terry
    Last edited by Terry; 16th August 2017 at 15:31.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  7. #7
    Forum Member
    Join Date
    Jan 2017
    Welcome to the forum my husband was diagnosed Last November he was also very fit at 57 and it was a huge shock but I have found this forum a great support being able to hear from others facing similar challenges. Hang in there.

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