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What type of powerchair footrests would be best for me?

Replies

  • Katherine HaywardKatherine Hayward Member Posts: 74
    edited March 2015
    Hi Arlene, I have spastic quadriplegia cerebral palsy, and hydrocephalus with a VP shunt. What type of powerchair footrests would be best for me?I have subluxation in my hips, rotation of my pelvis, feet and legs and my left leg is 1cm shorter than my right. When I sit, my posture is slouched to the sides and I fall forwards. I'm searching the Internet to have an idea what a technician could order for me. I'm thinking electric footrests because I can't adjust manually elevating ones, and the manual ones make my muscles tighter.I want to be able to electrically adjust them myself without asking for help. I also have scoliosis, and the effort of trying to sit causes me great pain and discomfort although I have physio .
    I haven't had great luck with technicians, they just wanted my money and didn't advise me well. My legs flop to the sides of the footrests too, and I'm looking for support round the backs and sides of my legs, but can't find any with lateral leg support. I want the footrest to be as compact as possible because on ones that fit onto the sides of a wheelchair frame I end up bumping them into things as I turn because of my coordination/ vision/ perception problems. What are the pros and cons of each type of leg rest and footrest? I can't find the information on wheelchair brochures or order forms, and when I contacted the wheelchair companies, they said see a technician or didn't reply back to me. I'm still looking around for another technician.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    edited March 2015
    Sitting is a real challenge for me, and get a lot of severe back pain and discomfort because of the effort for it is me. The effort and fatigue causes me more muscle spasms, which affect my entire body. I only get relief from this when I'm lying down. I'm currently saving to get a different wheelchair because the one I have does not have electric till in space or electric recline , and electric seat rise . I tried just the electric reclining feature on its own when I trialled some electric wheelchairs, but the problem is that I slipped all the way down the seat because I don't have good trunk control. I always slip because of this, I wondered if you could recommend me an electric wheelchair out of the ones I have tried so far ? They are the Sunrise medical quickie Jive M and the Invacare TD X.
    I'm interested in the TD X SPNB (narrow base ), but I don't know how stable it will be because of the base being narrow.
    In terms of seating, I have a Jay J3 deep contour shoulder height backrest which has built in lateral support . The thing is that I don't feel that I've got enough lateral support, and I will literally fall out of the sides of the backrest. I have J3 standard gel /foam cushion, but I feel there is not enough gel (the gel is around my bottom area and the back of the cushion ) and get really bad coccyx and back pain as well as pain in my thighs . Could it be that I need more gel in the cushion, or more supportive wedges? I have a supportive wedge in between my legs but inside the cushion to stop my knees and legs being together when I'm sitting, also the front sides of the cushion are raised a little, so that my legs don't fall off the sides, but I still feel I need more support around the back of the cushion, because I have the posture when sitting that I've already described to you in another post, and feel the support I have now is not enough. The last technician I saw said he can't adapt the chair I have more because it doesn't have the scope to adapt or the available accessories and add ons.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    edited March 2015
    I would really and appreciate your insight on my posts and your advice for what equipment to get the technician to order, so that I am better prepared, and can talk to a wheelchair technician when I next see one so that I can get my needs met better. I have a headrest on my chair because I have problems with head control, and find that the material that is made out of (foam with a medium – hard feel) feels too hard against my head and neck. I have problems with head and neck posture because of my VP shunt and CP, and I actually have two shunts ,one on either side of my head, but the working one is on the left side. Because of all the surgery I had in the first 11 years of my life, my head is really sensitive on the top and sides, but at the back of my head I have no feeling, so for example I can't judge whether the position of the headrest is comfortable or not just by feel when someone moves moves it because I can't feel it. Throughout my entire body, there are some areas where I have slight feeling, and some areas where I don't. So you see, my situation is complex. The spasms, pain and postitioning difficilties I have often have me in tears. I take Baclofen (20 mg) 3 times daily
  • Katherine HaywardKatherine Hayward Member Posts: 74
    edited March 2015
    Hi. I have spastic quadriplegia cerebral palsy, and hydrocephalus with a working VP shunt on the left side of my brain, and a redundant (not working) one on the right. Over the years, my GPs have constantly advised me to try and get the right posture when in bed. I need physical help to turn in bed, and feel most comfortable sleeping on my back, because when I am on either my left side or my right side, I feel dizzy and nauseous. I have an electric profiling bed with a pressure relieving mattress, and because of my posture from cerebral palsy, my legs and feet turn inwards, and my arms bend at the elbows and I can't get them straight. This means that when I am in bed, my elbows are directly supported on the mattress with my arms bent downwards , and this means that I have pressure on them , and it's painful for me. When I wake up, my elbows are red. The same thing happens to me in my ankles, and some parts of my back. My ankles turn in so far that they are literally against the mattress. To be honest I'm really worried about pressure sores developing, and at very high risk of them because I can't position myself when I am sitting in my electric wheelchair.
    Does this mean that I would be better off getting a different type of pressure relieving mattress? I'm not sure about the best brands and which ones there are available and whether you would be able to recommend one to me ? I read somewhere that there's a scale of pressure care need.
    In terms of a pillow, I have a viscoelastic pillow which seems to be helping me. My sleeping pattern in general is that I will get 5 to 8 hours of sleep per night, and wake up if I am in pain from my spasticity or posture. I once told a neurologist about this, and he didn't take me seriously, instead saying that I had chronic fatigue syndrome. I have never been considered with this before, and have had the same type of sleep problems my whole life. The levels of fatigue that I experience are the same as they have been my entire life, and are what I experience because of CP. He didn't listen when I told him that either. I talked to a social services occupational therapist who said that if I wanted a different type of mattress, I would have to be assessed by a nurse from my local medical centre, and it would be her that would make the assessment as to whether I had "medical need" for the different type of mattress or not. Is this correct and absolutely the case and what I would definitely have to do, or is there some other way around this? How is "medical need" for something like a mattress assessed, and what factors are taken into account ? I know about the NHS cutbacks, so would it be possible that I was told this so that the NHS can save money? I have no idea about the length of the waiting list for this type of assessment, or the process to get an assessment.
    Would an assessment be worth it and beneficial for me , or would I be best to just buy a mattress myself?
    Would you advise that I go to a different neurologist/Dr to have the report that the neurologist wrote with the mention of chronic fatigue syndrome changed? Who should I see The neurologist I saw was especially especially arrogant and dismissive which didn't help . matters.
    I'd like to add here that I wanted to post this in the sleep part of the community, but the discussion is closed and I don't know who else to ask.
  • BusyOTBusyOT Member Posts: 77
    Hi Kathryn, sorry for taking so long to answer you. I think you need an assessment from an OT that can meet you in person. I'm not able to give individual advice of such a specific nature without completing a full assessment. I'm not sure which part of the country you are in but most Wheelchair Service departments have an OT attached and they would be able to advise on all your seating and wheelchair queries. Beds are most often provided by the community nursing team but they often work together with the community OT's to ensure the correct provision. I would recommend you get some specialist advice before buying your own mattress - they can be very expensive and you should be sure that it is a good investment.
    Do you have a social worker? Perhaps they could help you find your way through the system to ensure that your questions can be answered. It can be very confusing and the process is slightly different in each area. The Scope helpline might also have some local contacts that can help you out. I hope you find the assistance you need.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    edited March 2015
    Thanks for getting back to me, Arlene. Who would be able to help me with funding sources for electric wheelchairs? I have an electric bed. I've been to Wheelchair Services and they gave me a list of providers (they can't provide an electric wheelchair suitable for my needs). My family doesn't have the money to help me and I don't work, so finding funding is a real issue. I contacted some charities who said they didn't have the money either. I'm in desperate need of a new electric wheelchair because I am in tremendous pain and discomfort in my present one because it doesn't have the positioning features I need. I need a wheelchair indoors and out for full time mobility, and I understand that wheelchair services don't provide wheelchairs for that level of need. I am looking for pressure mapping services, and tried to access them at my local hospital but was told I'm "not disabled enough"- this is totally ridiculous, I can't walk or weight bear, or transfer myself, and require help in every activity of my day to day life. I have scoliosis and lordosis too. How can I get access to the service without them denying me access? I already complained through the PALS service. I haven't named the hospital because I'm not sure if it's allowed on the forum. I contacted another hospital who said as I'm not registered there , I have to go to where I'm registered, which means back to the hospital who denied me help and back to square one. I've been through cushion after cushion and can't find one so far that works for me, and pressure mapping was recently suggested to me on another forum.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    edited February 2016
    I am interested in the Bodypoint range of joystick adaptations to help with gripping the joystick. I see Invacare has some but most of theirs are metal and I think they will be uncomfy. I have issues with grip, sensation and feeling, strength, coordination and control as well as resistance for driving a powerchair due to CP and I can't propel a manual at all. By looking at the catalogue of Bodypoint items, I have seen the stick joystick mount which is good for people with not much sensation/ grip. There's also the mushroom joystick which helps wih grip. Do these mounts help really? I have already tried 3 ones which are variations on a standard joystick mount, but still have the same difficulties all the time. Are they worth considering? I have been recommended head controls or a very sensitive joystick but the costs are high as you have to buy a master control and other control. I am not able to drive my chair independently for more than a few minutes but want to have that independence any way I can. Advice? Which controls would you suggest? I also have hydrocephalus and a VP shunt . My head is very sensitive and I have the most movement there even when tired. I do not have full head control, and suffer fatigue too. I have a headrest on my chair.

    Head controls are non contact and I have read that you just need to have your head near the proximity sensors. Driving my chair is so much effort Even with an attendant, and affects my stamina for other things during the day. I have spasms and tremors in my hands and spastic quad CP.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    edited March 2016
    Hi Arlene!

    Hee's a continuation of my last post.

    I have seen the Bodypoint powerchair joystick handles on a website http://www.besrehab.net/find-a-solution/by-brand/bodypoint/powered-wheelchair-joystick-handles/

    I have read all the information and decision guide but can't decide which is better for me. I have spastic quadriplegia Cerebral Palsy with spasticity in all 4 limbs. I struggle with stamina and strength and cannot drive my powerchair unaided. The small ball knob and standard handles are too small for me to grasp and I don't have a strong grasp and I have a lack of sensitivity. My hands/ fingers slide off the joystick easily and I have contractures in my arms hands and fingers. I have tremors and spasms and these are so strong they have broken standard joystick handles. I don't have much hand eye coordination or stamina and strength to maintain a forward/ directional command for longer than a few seconds without discomfort and my hands, arms and fingers seizing up.
    I am 34 years old so I don't need a children's joystick handle. I have read Bodypoint handles resist spasms. I'd be grateful if you could recommend a handle that may suit my needs. From the descriptions, I see the stick, mushroom and maybe dome ones may help. I cannot keep my hands on a trackerball mouse, so I don't know about the dome one. Is the rubber on the joystick handles comfortable? I am dependant on an attendant to move my chair.

    Would this kind of handle help me, or would an alternative control eg chin or head help? I have the most movement in my body in my head but my neck is fragile and I have a VP shunt for hydrocephalus. I have 1 working one and 1 redundant one. I easily get contractires in my neck because I don't have full head control.

    Kind regards,
    Katherine Hayward
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