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Thread: Manual Tilt in Space with Power Assist vs. Power chair

  1. #1
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    Manual Tilt in Space with Power Assist vs. Power chair

    Hello,
    This is my first post. I do not have a SCI so I hope it's okay that I post. I have read pages and pages in the Equipment section. Many thanks to all that post regularly – I have learned a great deal. I have Ehlers-Danlos Syndrome and would like some assistance for wheelchair use.

    EDS is a connective tissue disorder. My biggest problems are joint dislocations (left shoulder and left hip are worse), pain (DDD/scoliosis/stenosis), muscle weakness, fatigue and dysautonomia (Postural Orthostatic Tachycardia, Orthostatic Hypotension, Temperature Dysregulation). I have also been diagnosed with Pelvic Congestion and a decrease in Central Cerebral Velocity while upright so, for me, the bad collagen is affecting my cardiovascular system not just my joints.

    The Zero Gravity position is the best position for me – I have less joint pain, less muscle pain and less cognitive dysfunction. This points me to tilt in space.

    I am bed-bound in an adjustable bed and have tried various medications with little relief. I am a young 51 and need to get around my house better and it would be nice to be able to get out a bit. I have been disabled for that past ten years and I have a Medicare Advantage Plan (Humana Gold). Texas DARS is also helping me get some tools to be more independent as I am trying to get off Home Health Care.

    A rehab engineer came to my house and suggested a Pride Q6 Edge with tilt in space, elevating seat, power leg rests (basically my dream chair!). I usually buy my wheelchairs (power and manual) at garage sales or Craigslist but not had much luck due to sizing or various issues. I currently use an Invacare 9000XT Hemi and scoot around the house with my feet but that has caused severe shoulder pain in my left shoulder and in my left hip (leaning forward and scooting seems to have put too much strain on the hip joint so it is now dislocating more). The last 3 paragraphs are to explain the need for power at this time. I would love a rigid manual chair but my son, 2 docs and the rehab engineer do not feel that I am strong enough (EDS is a degenerative condition so I am trying to hold on to any muscle strength I have but I want to conserve my energy for the important things in life (hopefully, income) and conserve my joints.

    I do all of my exercises recumbently and swim when I am able. My goal is to get rid of Home Health Care, be independent in my home, be able to get groceries by myself. My future goals are to work again – most likely from home as I used to be a programmer. I currently volunteer (from my bed) for several organizations so I keep busy but I need income so I am trying to figure out what tools would help me.

    I live north of Houston so I do not have snow to deal with. I live in a mobile home but the area I live in has had the door modified (by me!) so width isn't a big problem. It would be nice to have a ramp out my front door and a lift for my car and DARS is looking at that but mostly, I just need a way to live independently in my home. I feel trapped by my bed, my bedroom, and my house so I am hoping to make changes little by little to change this. I have already made modifications to my kitchen based on suggestions here so now I can wash dishes - yay! and cook a little easier - double yay! The photos of beautiful kitchens were amazing (I spent a lot of time on the housing forum as well and hope to put in a roll in shower and pocket doors.)

    Question 1: The Invacare Solara 3G is a manual Tilt in Space that seems to be activated by the user (I do not have a caregiver). Or I could use the Invacare Spree 3G as I am 5'4 120lb female. Or Quickie TS with Tilt and Recline. I would use these with one of the power assist aids like eMotions or FX1 or even the DPX power drill contraption rather than a big powerchair. For these reasons:
    1. Easier to fit in a car if necessary – I drive a 2000 Ford Crown Vic and do not know if I can put a lift on the back end as it sits low to the ground.
    2. Not so big and obtrusive and lighter for a lift on back of Crown Vic.

    Question 2: Would a Medicare Advantage Plan and/or DARS be more likely to pay for a manual chair more than a power chair since I CAN walk a few steps? I think the fact that I can be upright for several steps would count against me more than my symptoms which start within 30 seconds of standing (dizziness, HR increase, BP drop, sweating, nausea, stumbling then fatigue afterwards). I know Medicare has tightened up their restrictions. Also, would they pay for the power assist aids? I know the FX1 isn't FDA approved yet but I am hoping that they will be available by the time I get approved (or denied!).

    Question 3: I have read so many posts that my head is spinning. In regards to power chairs, I know not to get Pride, Invacare low end, or Quickie. Go for Permobil (I like Corpus 3G on the C300-C500) or Invacare TDX SR (with GB motors) but it doesn't tilt in space -while the Invacare TDX SP does tilt but it has 4 pole motors. In regards to Marvel, I can't get a good read from the forum – some people love them and have more than one and other people say the pressure sores are a problem with the caster wings (?).

    I have an appointment for a wheelchair evaluation at TIRR Memorial Hermann in Houston on 11/15. I do not have a vendor lined up yet. I am okay with the chair the Rehab engineer suggested but I would rather have recline as my hips don't do well at 90 deg to my back and I need to change positions often during the day. And while I like the elevate feature, I would rather have the recline. The brand is worrisome as well.

    Any recommendations would be so appreciated. I'm sorry this first post was so long and that there are so many questions. I am grateful already for the pages and pages of posts of people helping each other, helping newbies and helping people without SCI. Thank you.

    Marti Z.

  2. #2
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    Forgot to say I have a Power Chair from Craigslist.

    Should have added that I have a 2000 Invacare Ranger II with MKIV RII controller that is in pretty good shape. The seat does not work for me so I could ask DARS for a new rehab seat with tilt in space functionality. I had found a replacement seat but can't find the link now. but it was supposedly made to work with that brand.

    Is that a bad idea because of the age of the wheelchair (it's barely used) or the parts not fitting right or the controller not handling the extra function?

    Should I suggest it to DARS and completely bypass the Medicare wheelchair route?

    I also have an old 1995 Pride Mobility Jet 1 that doesn't work but I liked it because it had a nice high clearance. I have it close to working.

    Lastly, could I change the seat of my Invacare 9000XT Hemi manual (folding) wheelchair to be more reclined - maybe with cushions or a seat and ask DARS for help with a power assist kit (the wheels are 22"). Can I rig up a power drill like the DPX system? I am a little handy (changed the fuel pump and the oil of my Crown Vic last week). Easy because I was flat on my back! Hmm, career change?

    My son is studying engineering and he has volunteered to rig something up for me. We don't have a welding setup but we have 2 friends that do. I have sent him links to all the cool power assist aids and the souped up wheelchairs. Would this be a better option than going through Medicare/DARS?

    Thanks,
    Marti

  3. #3
    Hello "martiz," and to Care Cure Community.

    These are questions you need to answer for yourself:
    ---Do any of the chairs I own, manual or power fit me properly?
    ---Are any of the chairs I own reliable?
    ---Are parts readily available? For how long?
    ---If I get a manual chair, do I have/will I have enough strength to transfer into a car, break the chair down (or fold) and stow it in the car myself?
    ---If I get a power chair, can I get a lift to fit my car and chair? Do I have/will I have enough strength and function to walk from the lift to the driver's side door of the car?
    ---Do I have/will I have enough strength and function to manually control the tilt in space or recline features if they aren't power?

    If you go through Medicare you will have to have a prescription for the chair and equipment your disability requires. That doesn't guarantee Medicare will approve this equipment, but a good evaluation for a chair, equipment and cushion plus a letter of medical necessity from your healthcare provider will be helpful in this process.

    One of our members "SCIfor55yrs" has recently gone through the Medicare process to get his Permobil power chair. By the way, this process can take many months. I don't think he would mind receiving a PM (Private Message) asking for advice on the Medicare process. One thing that I have read is that if you want a power and a manual chair, go through Medicare for the power chair and buy the manual chair yourself.

    I don't have any recommendations for you regarding chairs other than to say, my first power chair was an Invacare Arrow Action Storm Series with Gearless Brushless motors. It had power tilt in space. My second and current chair is an Invacare TDX-SP with power tilt in space. I have been happy with and have had very few problems with both of these chairs.

    All the best,
    GJ

  4. #4
    Senior Member ~Lin's Avatar
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    welcome from a fellow edser! (with dysaut) It's funny, I've noticed quite a few since I've joined. Probably just because they stand out to me!
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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    thanks GJNL!

    The answer is no to the first three questions.

    Maybe to the next one - I have never used an ultralight manual chair. I know I couldn't do it with my Invacare 9000XT Hemi.

    Then yes to the rest of the questions.

    Thanks, that gives me a clearer mindset.

    I have a prescription for a wheelchair from my doc but that is getting changed to a wheelchair evaluation prescription so I can be properly fitted. The rehab engineer did measure me but she wasn't listening to some of what I was saying and I was really sick when she came to the house so I am sure I wasn't communicating well.

    My doc is writing the letter of medical necessity but I get confused if she should do it or an OT/PT at the Wheelchair and seating clinic at TIRR Memorial Hermann Rehab hospital.

    I am hoping that even if Medicare denies me, I will have measurements and recommendations for models that would work for me then I can watch ebay, Craigslist and the forum for sales in this community and purchase one on my own (like I did the other wheelchairs - I am collecting them unfortunately!).

    Thanks for your advice.

    Marti Z.

  6. #6
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    Hi Lin!

    We've met on another forum. Thanks for the warm welcome.

    May I ask if your dysautonomia puts you in a chair? I have had additional testing recently that is helping to answer the questions - why. That's a relief. Sometimes, I think the dysautonomia reduces my functionality more than my dislocations/subluxations!

    If I am not being too nosy - can I ask what type you are using (power or manual) and what features (tilt, recline, elevating seat, elevating leg rests?)

    Mostly, I am hoping to function better alone and possibly do some part time work, to start with then move into full time. That is a lofty goal that may be unrealistic but it's out there for me to look forward to.

    Thanks for responding and take care,
    Marti

  7. #7
    Quote Originally Posted by martiz View Post
    used if she should do it or an OT/PT at the Wheelchair and seating clinic at TIRR Memorial Hermann Rehab hospital.Marti Z.
    I have not as yet had Medicare supply a chair. I got my current chair with private insurance about a year before I was eligible for Medicare. With private insurance, my primary care physician and a physiatrist wrote letters of medical necessity and the prescription was developed by an Occupational Therapist, seating and positioning specialist. The prescription was then signed by my physiatrist.

    All the best,
    GJ

  8. #8
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    After many more hours of reading the forum and watching YouTube videos, I just realized - the Invacare Solaris does not allow the user to go back into tilt in space without assistance. I was going for the "Manual with power assist" but I need tilt in space (about the only feature I HAVE to have). I can live with with anything else not being just right.

    Which means power chair. ugh.
    Last edited by martiz; 10-15-2012 at 03:05 PM. Reason: clarification

  9. #9
    Senior Member ~Lin's Avatar
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    Oh durrr! Hahaha, I blame the brain fog.

    I currently use a manual chair, I want to avoid a power chair as long as possible. My goal when my Dr asked me to consider a chair was getting more active not less, so I fought for a manual. And I've found I do have more energy say shopping with my manual vs shopping in a store scooter. I still can't do long distances and need assistance on ground that's difficult to push as well as all but the easiest inclines, but I've come a long way from being bedridden for over a year.

    IMO, no edser should ever use a standard manual unless they're being pushed by someone or propelling with their feet if possible. Those things ruin the shoulders of able bodied individuals over time.

    I don't have tilt, but I do have an adjustable on the fly back with my quickie q7. I chose quickie for that feature, I knew to spend any amount of time in the chair it would be necessary. I also tilt by resting back on my anti tippers. I get comments sometimes which is annoying, people teasing that I'm showing off because they think I'm in a wheelie. The q7 has 3 back angles that I use, there's one more but it's too far forward to be useful. I push from the middle, recline as soon as I'm not pushing, and use the forward angle for support leaning forward over a desk. I also have a Jay 3 back which comes with velcro foam blocks for custom support and further angle etc adjustability. I can move the foam blocks as needed while I'm out, and put the support just where I need it due to my scoliosis. I spend my time at home semi reclined in bed and frequently changing up my back angle. I cannot tolerate a normal chair for long at all, even moving frequently into strange positions to change up muscles used. I can't drive for long due to this, I get back spasms rather quickly which eventually pull my ribs out of place. Yet I've been able to spend long periods of time in my chair! Such as 6 hours. I hope to be able to keep increasing things to longer hours and more days per week.

    The back is the biggest eds thing with my chair, I also have natural fit push rims. I wear wrist braces nearly 24/7 these days, with time required building up over the years. I got my chair due to the inability to stand or walk much even with forearm crutches. But the improvements with my dysautonomia has been amazing. I realized one of the biggest drains on my energy was the constant up and down whenever I tried to do anything since I couldn't stay standing. As you know, each one of these triggers symptoms and was zapping my energy. My service dogs most frequent tasks before were helping me stand and stabilizing me until symptoms passed. She now only needs to do this at home when I'm not using my chair. I try to walk as much as I can to distribute damage and prolong my shoulders. But I use my chair for tasks that used to require the standing and therefor up and down. And I initially stood to transfer, now I don't unless I have to. That also prevents symptoms and saves energy.

    I hope this was helpful! I'm an open book if it can help anyone. But we have a big age difference as I'm only 27, and our needs may be vastly different due to eds in general and the progressive nature of it.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  10. #10
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    very helpful

    Quote Originally Posted by ~Lin View Post
    I don't have tilt, but I do have an adjustable on the fly back with my quickie q7. I chose quickie for that feature, I knew to spend any amount of time in the chair it would be necessary. I also tilt by resting back on my anti tippers. I get comments sometimes which is annoying, people teasing that I'm showing off because they think I'm in a wheelie. The q7 has 3 back angles that I use, there's one more but it's too far forward to be useful. I push from the middle, recline as soon as I'm not pushing, and use the forward angle for support leaning forward over a desk. I also have a Jay 3 back which comes with velcro foam blocks for custom support and further angle etc adjustability.
    I had no idea a manual did that. I purchased a reclining manual from garage sale only to find out it wasn't on-the-fly. I will look into the Q7 as I would like to have a real manual as a backup. What do you rest your head on when you are reclined?


    Quote Originally Posted by ~Lin View Post
    But the improvements with my dysautonomia has been amazing. I realized one of the biggest drains on my energy was the constant up and down whenever I tried to do anything since I couldn't stay standing. As you know, each one of these triggers symptoms and was zapping my energy. My service dogs most frequent tasks before were helping me stand and stabilizing me until symptoms passed. She now only needs to do this at home when I'm not using my chair. I try to walk as much as I can to distribute damage and prolong my shoulders. But I use my chair for tasks that used to require the standing and therefor up and down. And I initially stood to transfer, now I don't unless I have to. That also prevents symptoms and saves energy.
    This was tremendously helpful. I am hoping for the same type of improvements - the up and down IS draining and the effects last so long. I am really hoping this will get me out of bed - I have an adjustable so it provides the change in position. Zero Gravity is the best position for me- I can think so I hope to use that to work again someday.

    Thanks so much!
    Marti

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