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A lot of doubts about my disability

JuanxpekeJuanxpeke Member Posts: 3 Listener
Hi, my name is Juan and I'm a 19 years old chilean student and I am paraplegic since I was 2 years old (C7-T1 height). My problem is that, since I have memory, I never concentrated on disability or informed myself how to deal with it in the best way (my mother always made my main concern to be studies), and nowadays I have a lot of dreams and things that I'd like to do but I can't because my disability (or rather my lack of knowledge of how to deal with it) impedes me. For example, I can't transfer from the floor to my wheelchair, or from my wheelchair to the bathtub or the toilet, I can't go to most of places because I don't know how to pass a high step, or what to do if I'm in a place without  restrooms for disabled people, or in a friend apartment, and I get tired very fast and I just want to go back to my house. I really would love to go anywhere and anytime and not to think all the time "no, this is impossible because..." or "I can go, but i will need someone to help me and I can't be there more than X hours" or even think that I'm literally nothing if someone steal my wheelchair or if I accidentally fell down from it. So I decided to take a break from college and freeze for a semester in order to improve my skills and be able to face most of the things I mentioned, but I don't know how to start, and I don't know if the work will be worth or not. Could you recommend me some kind of training to do to gain strength in the arms or to know how to make transfers, some channel or some type of web where I can learn about it? Or someone knows if with my disability I'm able to do all the things I mentioned if I work on it, or it just would be a waste of time? I really want to have a life as normal as possible, depending on the least possible things. Thank you.Hi, my name is Juan and I'm a 19 years old chilean student and I am paraplegic since I was 2 years old (C7-T1 height). My problem is that, since I have memory, I never concentrated on disability or informed myself how to deal with it in the best way (my mother always made my main concern to be studies), and nowadays I have a lot of dreams and things that I'd like to do but I can't because my disability (or rather my lack of knowledge of how to deal with it) impedes me. For example, I can't transfer from the floor to my wheelchair, or from my wheelchair to the bathtub or the toilet, I can't go to most of places because I don't know how to pass a high step, or what to do if I'm in a place without  restrooms for disabled people, or in a friend apartment, and I get tired very fast and I just want to go back to my house. I really would love to go anywhere and anytime and not to think all the time "no, this is impossible because..." or "I can go, but i will need someone to help me and I can't be there more than X hours" or even think that I'm literally nothing if someone steal my wheelchair or if I accidentally fell down from it. So I decided to take a break from college and freeze for a semester in order to improve my skills and be able to face most of the things I mentioned, but I don't know how to start, and I don't know if the work will be worth or not. Could you recommend me some kind of training to do to gain strength in the arms or to know how to make transfers, some channel or some type of web where I can learn about it? Or someone knows if with my disability I'm able to do all the things I mentioned if I work on it, or it just would be a waste of time? I really want to have a life as normal as possible, depending on the least possible things. Thank you.

Replies

  • chiariedschiarieds Community champion Posts: 6,408 Disability Gamechanger
    Hi @Juanxpeke - Hi Juan, I would suggest asking your GP for a physiotherapy referral. A physiotherapist would be able to show you how to build up your upper body strength so you would be able to do transfers, etc.
  • MisscleoMisscleo Member Posts: 646 Pioneering
    So agree. not only would it build you up. It would help your mind too.
    Music would help while your exercising 
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    that`s exactly what I would say...a physio......if you try to build yourself up, without expert advice, you could hurt yourself and be less able.

    Look forward to reading how you get on. So young, bless you x
  • CressidaCressida Member Posts: 575 Pioneering
    @Juanxpeke you sound a very determined young man. I hope physio will help you. Keep following your dreams. I just have to say how cute is that toddler in your photo. 🙂
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I'm not sure that jumping straight into Physiotherapy is necessarily the best bet. I would think that a proper Occupational Therapist assessment might be a better start point especially as is seems that your family has either overlooked your issues or simply taken care of them for you and you need a better understanding of your overall needs before trying to work on specific issues. Reaching the age of 19 without such an understanding must make life extremely challenging but on the positive side it could also give you some great feelings of achievement as you overcome some of the problems you face. I am sure there are many things that you will be able to do for yourself once you understand better how to approach such problems logically. I admit though that it can be difficult to approach some emotional issues with pure logic.

    I wish you good luck though.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Ami2301Ami2301 Community champion Posts: 7,023 Disability Gamechanger
    Hi @Juanxpeke and welcome to the community! I think being referred to both a physiotherapist and occupational therapist would help. Physio is hard work but it is worth it! Occupational therapy taught me how I could still do the things I like to do, just a different way or with the help of a few aids.

    Please keep us updated and let us know if we can help you with anything else :)
    Community Champion
    Disability Gamechanger - 2019
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,320 Disability Gamechanger
    Hello @Juanxpeke and welcome to the community.

    May I ask if you are based in the UK or Chile? I got the impression from the way you posted you are likely to be Chile, however your English is very good.

    The advice given is sound if you have easy access to these services, I have no idea what the health services are like if you are in Chile, sorry.

    My  concern is that you could end up concentrating on developing a small number of muscles which might make sense for what you want to do, but muscles do not operate interdependently from each other and concentrating on some and ignoring others can cause you further problems later on.

    Do you have any wheelchair sport teams near where you are? Even if you do not have much interest in sport it would offer you a lot, a support team around you who understand where you are coming from and have experience to advise you on a wide range of issues you are likely to come across. Regular warm ups and exercise. Plus exercise always seems more pleasurable when it is done as part of an activity.

    Is it worth your while? Well only you can really answer this, health wise it could only be good for you if done properly. Will you ever achieve complete independence I cannot tell you, however I do believe any independence we can achieve as individuals is important, however big or small. 


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • chiariedschiarieds Community champion Posts: 6,408 Disability Gamechanger
    edited December 2019
    Not trying to be confrontational here, but whilst your mention of sports activities is another avenue to explore, physios do understand the importance of both agonist & antagonistic muscle groups, etc. in the arms, & also how to build up core strength depending upon the level of the lesion, which we don't know in this young person's case. Above all he's needing functionality in the areas he's mentioned.
    I find Ami2301's advice particularly sound. Many moons ago, when I was training as a physio, there were no occupational therapists in our city hospital....so we were shown how to do both, so I'm sorry I don't mention OT more often; it most certainly has it's place.
    I don't have much experience, as I only worked in a Spinal Injuries for 3 or 4 months, where there was also a Remedial Gymnast. I attempted wheelchair basketball, as I was OK then. The paraplegics amazed me; they also had adapted wheelchairs to enable them to play this sport. It might be difficult to get an adapted wheelchair to enable Juan to participate in sport, although there are many benefits as you mention.
    Perhaps physio & OT might be considered first.
  • JuanxpekeJuanxpeke Member Posts: 3 Listener
    Thank you all for your comments and advices, as soon as I finish my current semester at university I'll make an appointment with a physiotherapist and occupational therapist.

    I'm based in Chile, I born in Arica  (a small city north of Chile), I'm normal at English, but I write this with translator help hahaha. I achieved a national maximum score in mathematics on the exam to apply to de university (Prueba de Selección Universitaria), so I decided to study computer engineering at the University of Chile, a good college located in Santiago (where I live right now). Fortunately here in Chile is the Teletón Foundation (a nonprofit foundation that helps to the disabled people rehabilitation), I went to this foundation since I had my accident (I was hit by a lost bullet in the neck) up to I learn to do my urinary chatheterization on my own (12 years approx.) but from there the only sessions I had were for leg massages or things like that, and nobody worried that I was able to make transfers or not or do another things on my own (my parents have always worried that I study and when I work and earn money hire a nurse but I don't want that, because I really feel that I can do more things than I do now). 

    I have always been very busy with studies so I have never been able to solve this problem and it was in the end of this year that I thought I had to make a change in my life, regardless of whether I was successful or not.

    Thanks again for make me feel that I am not alone in this, the next year I will try to upload in the forum all the goals that I have achieved.
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,320 Disability Gamechanger
    Hi @chiarieds you are not being confrontational at all. 

    Being mainly UK based members response tend to be focused on UK based solutions, which are not always universally available, or may be available but at a price some people may not be to afford, hence the reason for asking where he was based. If OT and or physio are readily available then yes this should be the first choice for moving forward. I did say this in my post.

    However I do still stand by my additional advice simply because of the additional advantages these will give to Juanxpeke. Plus in part my response was to the fact that he was looking for online solutions in the first place rather than services that may be available to him. 

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • chiariedschiarieds Community champion Posts: 6,408 Disability Gamechanger
    @Juanxpeke -  I think we all admire your achievements, and hope you will be successful in time in overcoming the physical problems you are now looking to address. Thank you for sharing, and I look forward to hearing from you anytime.
  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,320 Disability Gamechanger
    Hi @Juanxpeke
    Congratulations on your studies and getting into university.

    As parents we can only do what we think is best for our children and we don't always get everything right. Your parents have helped to give you an education and a means to go on and hopefully support yourself in life and this in itself will give you more independence. 

    Part of growing up is learning to accept what your parents have given you, but then to move on to take responsibility for achieving what you want out of life. This is exactly what you are doing. 

    I look forward to reading your posts, but also if there are times you want to ask questions, express your frustrations or just need some friendly support we are here for you. Hope things go well for you.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • Richard_ScopeRichard_Scope Community Team Posts: 2,506 Scope community team
    Hi @Juanxpeke
    Good to meet with you.
    Here is a link to some information about people with disabilities in South America. 
    https://www.ruhglobal.com/pwd-latin-america-david-perez/ 
    I would encourage you to contact David Perez Rueda.
     
    Scope
    Specialist Information Officer - Cerebral Palsy

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