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Thread: First Ultralight, New HPCS coding, where to start? Holy Chair Graveyard Batman!

  1. #1

    First Ultralight, New HPCS coding, where to start? Holy Chair Graveyard Batman!

    Hello Net, long time lurker, first time poster. I'm sorry but this is a novel, I tried to answer anyquestions I could think of in advance. I didn't realize I had so many issues until I wrote them down, then I realized, I have so many issues I should open a comic store.
    A bit of background, I have Secondary Progressive Multiple Sclerosis and Chiari Malformation. Failed Chiari surgery has left me with migraines 3-5x week, lifting heavy definitely a trigger. I drive and will be transferring the chair over my lap so any help is appreciated. My abilities, left side spasticity and minor right leg spasticity (legs scissor). Turning my neck w/o turning my torso is a migraine trigger. I'd like a seat back that is so supportive it becomes a second skin so I can turn my chair and interact without fearing it will land me in bed for the rest of the day...

    I've owned a manual, a scooter, and a power chair. At the time I purchased my last chair I really wanted a power assist for my manual (somewhere around 2003 I think), but I could only find three reviews, negative, on the power assist that was currently available. I've owned three chairs over the years, but this site introduced me to the idea of a seating clinic, thank you! If memory serves, DME may have measured me for my last chair, a foldable electric Quickie V-121, (2004), but they added so many bells and whistles it doubled in price compared to Spinlife. If Spinlife had a choice in size I don't remember, I could fit a Big Gulp in my 18?next to me at my highest weight. My one constant has been portability, each time I've tried to find a chair that I can breakdown and carry in/on my car on my own. However, as everything has it's lifespan, the electronics in my Quickie died 5yrs ago. I used my forarm crutches for my daily, and my manual if required for a day out.
    That worked for me, until I loaned my manual out to a family member who needed it more than me...

    I've have two severe M.S attacks this last year, and combined with daily migraines, if I'm not in bed it's a toss up between my muscles freezing up, falling on my crutches,crawling around the house. It's tough keeping up withan active family on all fours. I've been lurking for months, for my first ultralight I thought I had it narrowed down to a ZRA or TRA with Smart Drive. Then I found the post about Medicare codes changing. I have BCBS, and it took 10mos for my SideStix to go through because they were an out of state provider and the script needed to be rewritten three times, I don't want to do that again. I've been referred to a seating clinic, and my GP will write out whatever I need. So, now what? TRA with W/ Smart Drive and Freewheel with codes and dx codes? Should I just go to the seating clinic and have written out what I want? With help I can spec out my Invacare Patriot SL(manual), an Ebay special 14yrs ago, it's definitely not perfect, but I think it's 16? which is the closest I have to fitting me. The script to the seating clinic has gone through already. I told my GP I would provide them with a prescription request for the wheelchair,thoughts are;

    Lightest Ultralight Manual Titanium Wheelchair Possible. Titanium,due to the dampening qualities for Spastic Hemiplegia and Migraines; ultralight weight for Multiple Sclerosis, Chiari Malformation and Encephaloceles
    Smart Drive MAX Mobility Due to Spastic Hemiplegia, Multiple Sclerosis,Chiari Malformation, Encephaloceles
    Freewheel Due to Spastic Hemiplegia, Multiple Sclerosis, Chiari Malformationand Encephaloceles
    Thoughtson hand rims? I'm allergic to latex and neoprene, I think Out FrontSurge LT and Spinergy Flexrim are the only two latex/neoprene freehand rims. Thoughts, comments?
    If you've read this far you deserve a medal, but I don't have a medal, so if we ever meet up I'll buy you a drink! Thank you so muck in advance!
    -Beth

  2. #2
    Beth,
    i am sorry to hear about all of the struggles you have had with chairs but it seems like you are on the right track now! This will probably be long as there is a lot to respond to your post so I apologize in advance. The seating clinic will take care of measurements but you will want to make sure you all agree on the rest of the chair and the type. I have had an aero r (would never recommend personally), an aero z which is the aluminum version of the Zara and now an aero t titanium which is the same as the tea but required to be processed the way it was due to insurance coverage which may be what you need to do with bobs too but they are the same and if you get a good dime they will know what to do to get coverage. I love my aero t and I am glad I got it in titanium because it does make a difference! Now for a couple other things:
    1. Get demos. If you want the tra get that model in a demo so you can make sure it works. Hopefully you can convince them to give you a week. Same with the back, hand rims, smart drive, and free wheel
    2. Backs- pick two and try them both. Consider the future of your condition when choosing such as amount of lateral support, height, and hardware you need. I recommend looking into the roho agility as an option. It has a roho cushion area for the spine which is handy for changing needs. I have also tried the icon and the adi back rests and they are both good backs too. You won't know what works best until you demo them
    3. Hand rims- I tried the flex rims and within a few minutes knew they were not a good fit for me. I went with natural fit which are like the surge rims after using aluminum ones for 2 years and it was one of the best investments I made. Better control and grip on chair which made pushing easier. I also noticed my hands don't get cramped up as much
    4. Get the closest fit you can. Don't listen if the due says, but you will gain weight. This does happen a little but in my experience the extra space created more problems and I didn't gain enough to warrant the difference even three years later.
    5. Your diagnosis will be listed for reasons for what you need but the justification needs to be more specific. I recommend writing out what you want and why/how it will impact your use. For example, I got out front glide forks because of spasms. Realistically they help with spasms for me but they also make things safer because every crack doesn't become a death trap and they are better in grass. The insurance company doesn't take into effect outside use so make sure it applies to inside use and the impact on your medical situation. Another example is my solid back- it is better support and more comfortable for me but to the insurance company because of positioning needs for lateral support and scoliosis.

  3. #3
    Thank you Kristopher for helping me along this path. Until I reread my post, I didn't realize how whiny it sounded-oops, unintended, honest. After combing posts and seeing what info people failed to post in first posts, I uh, overshared? I'm just happy very happy to be off the treadmill of GP writes a prescription for a chair like they're ordering a pizza. When I've never PROPERLY been walked through this (15 yrs of chairs). "You're a girl, so I assume you want something pink with sprinkles?" What, uh, huh?

  4. #4
    Senior Member ~Lin's Avatar
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    I'll have to come back to this due to headache myself, but I assume you mean special push rims (not basic aluminum or titanium ones) when you say latex free? You might want to double check the materials in the surge grip strip won't be an issue for you. And the natural fits are just aluminum, with either aluminum or vinyl dipped thumb ring depending on if you need the extra grip.
    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.

  5. #5
    Great attitude and sense of humor, Beth.

    I'm a fan of TiLite chairs; I believe a titanium AeroT would be a great base for what you need. I have neither spasm issues nor head-turning issues, so I know little about appropriate products, but I know they're available.

    Regarding pushrims, I used Natural Fits for several years (before Surges were available), first with the thumb ring and then without. I've been using Surges now for a couple years. Users have a love/hate relationship with the oval style of NFs and Surges-- I fell in love with the NFs after about 30 secs of use (on a demo chair). I wheel outside on hilly terrain a lot, and Surges are great because of their extra grip, but they are overkill for inside and flats outside. Before I switched to Surges, I used Natural Fits (long tab without thumb ring) for several months; they worked really well for me in most environments; on the steepest hills, I appreciate the Surges. (With SD you won't need the extra grip of Surges.) Try the NFs to make sure you like them.

    Glad you finally posted
    Chas
    TiLite TR3
    Dual-Axle TR3 with RioMobility DragonFly
    I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

    "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
    <
    UNKNOWN AUTHOR>

  6. #6
    Who's paying for it? If its Medicare or some insurance you need to be careful how you ask for it. So you get what you need.

  7. #7
    I have BCBS, for whatever that's worth. I'm not sure if I should start with a rough prescription from my GP then go to the seating clinic for a more detailed page by page form letter for insurance, or bring my ideas to the seating clinic and go from there (Good Samaritan in Phoenix if anyone is familiar).

  8. #8
    Lin,
    I hope your head is better now, as a member of the frequent brain fryers club I'd like to say, thank you so much for taking time out of your headache to answer my post!
    Assuming the website is correct, Surge/LT's and Out Front are the only hand grips I'd be able to consider, their other products are latex free but have neoprene in them (gloves are a pain to find too). I believe Spinergys are fine, (rubber) can you use any wheels with them? My manual chair has Marathon Plus and I liked them outdoors, although the chair is heavy, and I don't know how much of that is the tires.
    Last edited by Fallingwithstyle; 03-05-2015 at 11:51 PM.

  9. #9
    Senior Member ~Lin's Avatar
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    Out Front is a brand, not a push rim itself. You made sure the Surge grip strip doesn't have anything that would bother you? The natural fits are the surge minus the grip strip, and plus a thumb ring. You can add on the thumb ring to the surge if you desire, and like I said the thumb rings come in aluminum or vinyl dipped aluminum. The pushrims themselves are just aluminum. LT is the size, I use natural fit LTs. And there are vinyl dipped push rims in addition to the foam and pushblax type ones when the plain aluminum or titanium rims are not enough grip. For me its part grip and part ergonomic joint issues. There are also some new pushrims by carbolife. There really are tons of options even when basic push rims won't work for you, and issues with materials. What are the problems you have with standard push rims? I'm going to assume thats what you have on previous chairs. If you can describe the specific problems it would be much easier for people to make recommendations of what might work better. For example I have trouble gripping due to muscle and joint issues in my hands, and nerve damage along the ulnar side. The shape of the natural fits allows me more contact with the pushrim despite the limiting use of my last 2 fingers. I use the vinyl dipped thumb rings for added grip, and to use them without the thumb ring results in wrist and thumb pain for me. When I got my new wheels, they arrived without the thumb rings and it took them about a month to get them for me so I had to go back to my old wheels while waiting. I also wear wrist braces, which changes my grip and positioning from others.

    Spinergy flex rims are a combination of wheel and pushrim, the metal of the rim is attached to the rubbery material which is then attached directly to the rim of the wheel. There have been complaints about them wearing out easily, and since its all one and not a separate rim and push rim you can't replace things if one or the other is damaged. You can use whatever tires you want, like marathon plus.

    Thanks, the headache is getting better. My neurologist called in a medrol dose pack for me, he offered to move up my repeat occipital nerve blocks to tomorrow but the timing is when I have another Drs appointment so I can't It started late saturday night so the other day I was getting ready to blow my brains out. I get migraines as well, initially thought it was one and took my imitrex. Some of what you described sounds like occipital neuralgia as well, in case you've never tried blocking the nerves. I had one Dr press on a spot on my skull and deem it impossible for me to have ON. Another Dr pressed on my skull leaving me in excruciating pain and deemed it ON. Then my current neurologist said the best way to test was to give the nerve blocks and see if they help, and they certainly did! Now I can better differentiate between a migraine and ON headache.

    I've never been to a seating clinic, but I've had an evaluation done by an OT similarly. So basically you'll have the evaluation and discuss all the possibilities and hopefully try out some stuff to get a better idea. You'll decide on the products, and the sizes. Usually the DME will be there as well with whoever is performing the evaluation. It will be up to the DME to do that page by page request for insurance approval. They will ask lots of questions about your functions so they're able to justify to insurance why you need each specific option.
    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
    I use all leather climbing gloves I buy them a bit tight, stretch them to fit using shoe stretching liquid, and have a cobbler sew on finger pulls so I can get them off. Gloves made for wheelchair users last me a month or so. These gloves last me nearly a year (with some epoxy applied to wear spots).
    Chas
    TiLite TR3
    Dual-Axle TR3 with RioMobility DragonFly
    I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

    "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
    <
    UNKNOWN AUTHOR>

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