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.
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.
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