Neurological conditions
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MS THERAPY

michalismichalis Member Posts: 1
edited February 2017 in Neurological conditions
initially I was diagnosed with MS at the age of 36 I am now 5 years post stroke The only form of therapy I have had was at the MS centre I used to visit this was remedial therapy(I paid for) I have never been offered physiotherapy from the health services. They assume that I am a lost cause and a waste of resources Where do I go to get some physiotherapy My body is gradually seizing up and I’m getting desperate and my wife being my only carer is having trouble moving me It’s not sympathy I need physiotherapy. I have tried to get some therapy through my GP but have been refused. This being the case am I justified in using what talents I have as a residential building consultant to solely go in raising the funds to pay for any physiotherapy anf equipment to help me . Am I permitted to do this while receiving benefits. Due to my incapacity it would obviously be nothing physical. Can this be deemed as not for profit as the entire proceeds if any would be used for help in regaining lost mobility

Replies

  • the_velvet_girlthe_velvet_girl Member Posts: 103 Courageous
    My neurologist referred me to a neuro physio. It might be worth asking to be referred if you have neurology input.
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi there Michalis,

    Which benefits are you receiving? There are some provisions to participate in 'Permitted work' whilst in receipt of certain benefits. If you could let me know which ones you receive I'll see if I can help with your query. If you want to talk in person please get in touch with me at the helpline or email [email protected]

    Kind regards
    Debbie
  • michaelmichael Member Posts: 3 Listener
    hello again further to my comment I am a residential building consultant have been building renovating and repairing all my life now I draw them . 2 projects I have completed are a fully accessible 3 bed holiday home/lodge for family and or carers and a completely refurbished/rebuilt Victorian terraced with a6t least i floor disabled accessible . I will be more than happy to email copies of these to anybody that's interested they include scheduled working drawings and a fully itemised project management spreadsheet
  • michaelmichael Member Posts: 3 Listener
    I am sorry but l have a deep mistrust about the governmental/council services, which stems from experiences when I first made contact with them after being diagnosed with MS in my mid 30’s working in construction born to build. I was encouraged to attend a residential college away from home for a year I opted for a building related course quantity surveying I have always had a keen interest in ‘CAD’so with my building expertise . along with’CAD’ and quantity surveying I would still be able to build albeit on a screen. Only to discover that my benefits had been cancelled and had to re-apply as a new claimant, this was a number of years ago. Ever since all my experiences have been the same. I was issued a letter stating benefit award for life. However with each change of administration comes different rules even more so with the current lot and their austerity measures We were told because of my disabilities we would be entitled to an adaptation grant, which was refused, we finally had to ,use every penny of what we had and some from family to get the work done fortunately with me being ,a builder I was able to call on contacts to get the work done for our needs not by somebody fresh from university who had no idea I have sympathy for those who have no option. It does not matter what business these individuals are in. All they want is employment with a contract and pension with only one aim earning brownie points working their way up the corporate ladder with one function to reduce spending regardless of the consequences The needs of the individual are of no concern. Employing inept individuals to discourage further contact for help and covertly cutting welfare spending intentionally or not. In our case it is working we try as much as possible to avoid formal contact because of our previous experiences. Particularly with the occupational therapists. My benefits were originally ‘DLA’ ( awarded for life) changed to ‘ESA’. I think the current term is ‘PIP’ .As I said we have no faith or trust with any of these, which is why we have reservations of making any formal contact. MS for me was gradually debilitating complaint which we were coping with, where the stroke in a few seconds our lives were changed we have lived with the effects of MS but it seems or load is a bit heavier. This has placed me in a unique situation with my building expertise and my ‘CAD’ knowledge I am able to create plans particularly for disabled living.Who better than a builder in a wheelchair all from given dimensions and brief. Regardless of what fully disabled accessible holiday home/ lodge and home extensions. All for free however should anybody wish to show appreciation they are welcome to make a voluntary donation to raise funding and awareness for ‘Imf therapy ‘ their website www.imf-therapy.co.uk . All I am asking will this have any affect on my bnefits. As everybody especially my family are concerned because of previous experiences I would be making a big mistake. Sorry about his epic post got carried away


  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Hi Michael,

    Thanks for your epic post, don't worry about getting carried away, sometimes it's good to get it all off your chest. I understand your concerns about contacting the DWP and making enquiries about permitted work. A lot of people get nervous at the thought of making contact and rocking the boat.
    Unfortunately, unless you carry out permitted work there are no provisions (as far as I am aware) within the legislation which allow you to earn money to pay specifically for therapy. The money you earn would be counted as income. It's perfectly possible to carry out permitted work without having your benefits taken away or reduced. It might be a good idea to get some local advice and someone to support you with some more in-depth advice about permitted work. It's also possible to carry out permitted work on a self-employed basis but this is a little bit more complicated and it's likely that you will have to get some support from the Jobcentre with this. If you would like me to try and find some local support for you do let me know and I will start searching.

    I hope this has helped. If there's anything else I can help with let me know.

    Best wishes
    Debbie
  • Alex22Alex22 Member Posts: 11 Connected
    I just wanted to mention something which you may be interested in. I have spoken to people with MS who smoke cannabis for medicinal reasons as it helps them to relax. one guy spoke to swears by it and says it is much better than the normal drug he takes.cannabis acts as a muscle relaxant and can reduce spasms and tremors. I know it is technically an illegal drug, but it really shouldn't be. It is perfectly safe, and in fact studies have found that alcohol is 14 times worse than cannabis. there are loads of people who smoke cannabis for medicinal reasons because it has so many medical benefits. Google it. I don't smoke it myself because my parents probably wouldn't agree with it, so I can't comment from personal experience. but everyone I've spoken to about it says it is very good for conditions such as MS and CP which involved spasms.
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