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  • #149774
    DMD power wheelchair advice please

    Hi,
    Just posted this in parent forum, but think it is more appropriate for here:
    my son who is 6 has DMD and lots of other health conditions. Don’t know if it’s the DMD alone, or combined with his other health issues that also cause weakness and tiredness, but he has never been able to self-propel in his manual wheelchair, which we have had for about 2 years now. We have therefore asked for a power chair so that he can have some independence when we go out. He can still walk inside the home, although we sometimes have to carry him. We are waiting for the assessment but have been told by our physio that our wheelchair service will only issue a powered indoor wheelchair when a person cannot walk inside the home. We will go the assessment, but what we’re after really is a powered wheelchair for outdoor use. We may have to look at funding it ourselves somehow. I’d be grateful to know what power wheelchairs other parents have found useful for roughly this age group. My son is small for his age as well.
    Many thanks, Chris

    ceejay
    Participant
    Posts: 0
    Joined: 25/10/2016
    #149816
    Reply To: DMD power wheelchair advice please

    Hi

    Firstly welcome to the forum.

    One option is asking the MDUK funding department for assistance. The Joseph Patrick Trust.
    if in England the Wizz Kidz might help.
    If in Scotland http://www.eileenmccallumtrust.org/Trust for DMD.
    Rotary Club, Traders Associations or Variety Clubs

    Second, Im not suggesting fibbing b ;) but don’t highlight that your son plans to keep walking indoors or even if he doesn’t plan to take chair to school. Your son and the family cant envisage how liberating the chair will be till its in situation. It is morally wrong for the NHS to make a rule on a progressive illness that says you cant have an outdoor chair till you have an indoor chair need.

    My first hurdle when getting my first NHS chair was access. I was refused a wheelchair lift for outside as I had no chair. NHS refused chair as I had no access :cry:. Look at your external access. If you have steps request a ramp from Council or get a Home Facilities grant if you own home to improve the access to take away this excuse the NHS may jump on. Build a case to the Council that you can no long lift son up stairs in or out of chair in a safe and dignified manor.

    Request your sons neurologist and Respiratory if he has one to write supporting letter along with the MDUK care adviser/Physio for your area. If you post your area I shall look for contact details

    see
    http://www.musculardystrophyuk.org/wp-content/uploads/2015/02/wheelchair-guidelines.pdf

    http://www.musculardystrophyuk.org/wp-content/uploads/2015/02/Chairs-to-help-with-sit-to-stand-2016.pdf

    the above fact sheet might help you be prepared for assessment.

    DMD pathfinders on Facebook may have some ideas of chair design.

    Cat

    Your going to want the correct seating but dont right of Ebay or gumtree.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #150053
    Reply To: DMD power wheelchair advice please

    Hi Cat
    Many thanks for your response. That’s really helpful. We have a date for the wheelchair assessment now, the end of the month. We are in Watford, Hertfordshire, and the wheelchair provider is Millbrook.
    We are in the process of applying for a home facilities grant, just about to have a visit from the Council surveryor along with the paediatric OT. The plan is for an internal through-floor lift, ramp access to front door (there is only a very small step to the front door), plus movement of various doorways and one internal wall to allow necessary turning space etc. A lot of work so it will probably take some time to complete.
    Yes, we always carry son up and downstairs, which has becoming increasingly hard (my partner fell with him recently), and when he is very tired, we have to carry him between rooms and to the toilet, so hopefully we can make a valid argument…Thanks for your tips. I’ll keep you posted. And yes, Whizz Kidz looks hopeful.
    Will take a look at DMD Pathfinders as well.
    Kind regards
    Christina

    ceejay
    Participant
    Posts: 0
    Joined: 25/10/2016
    #151847
    Reply To: DMD power wheelchair advice please

    Christina

    Hi sorry for late response. your message has just shown as a nrw response on my list.

    Glad things are starting to move regards house adaptations

    another good place to look is Facebook group called Muscle owl. I have recently seen discussions by them on just this subject of rights for accessing wheelchairs for school etc in conjunction with another family who are campaigning.

    cat

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #152041
    Reply To: DMD power wheelchair advice please

    Hi Ceejay

    I’ve just come across your message and wondered if you’d come across
    Turn2us.org.uk and disability-grants.org

    Both the above might direct you to organisations where funding might be possible. There is also treeofhope.org.uk and newlifecharity.co.uk and caudwellchildren.com

    Hope this is of some help and if you’d like a demo of the Trekinetic wheelchair, please feel free to call me on 07973 731194

    I believe you’re in Watford which makes us almost neighbours

    Good luck
    Michelle Katz
    Beyond The Boundary Wheelchairs

    Beyond The Boundary Wheelchairs
    Participant
    Posts: 0
    Joined: 09/10/2017
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