Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 A very good friend of mine with CFIDS uses a wheel chair becasue of the fatigue. Just think of it as temporary; untill you recover more energy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 .... what Laurie has done (and I did many months ago) is wear a thick 'painter's mask'... and carry a few piece of the good licorse... it gave just enough 'extra' to make it possible... but that depends very much on where you are at... If someone asks why? - " He has a weakened immune system " (true - but not the reason to wear it) ----- Original Message ----- From: Philip L Comer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Phil; I have been giving some thought in this direction too and our loss of mobility is something we grieve for. As you perhaps know ... I am the person who has been doing all the posting about mitochondrial disease. I am *not* suggesting that this is what you might have, but I wanted to share with you that a number of we mito patients have purchased the scooters and love them because they give them their mobility back. Somehow there doesn't seem to be the same stigma (if that is the right word here) attached to the scooters ..... we see them on the streets much more often than wheelchairs! If you have a problem with sitting upright as well as lacking energy for getting around, then a wheelchair is what is indicated ..... but if you have no problem with the sitting, then a scooter may be the answer for you, too! I just am having a little difficulty taking the plunge! <Grin> Shepherd, Canada Philip L Comer wrote: > ..... I'm wondering about getting a wheelchair as it might make it > easier for my wife and son and I to go out and do things. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 Phil, I think it's a great idea! You can participate in family activities. I would get tired when sitting too and if I can have a head support, it helps. -----Pùvodní zpráva----- Od: Philip L Comer <philcome@...> Komu: onelist <onelist> Datum: 3. února 2000 18:11 Pøedmìt: Wheelchair From: Philip L Comer <philcome@...> This is really difficult for me to bring up as I guess it's my pride but I'm wondering about getting a wheelchair as it might make it easier for my wife and son and I to go out and do things. I'm simply too exhausted to stand and walk in museums and other places. I'm wondering if anybody else on this list does this to help deal with the fatigue? Phil ---------------------------------------------------------------------------- Please click above to support our sponsor ---------------------------------------------------------------------------- This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 >>Phil wrote: easier for my wife and son and I to go out and do things<<< ::: Maybe a supply house would rent one, or ask if someone just bought one , get their name if in your neighborhood, you could see how it does, seems the skooters are the popular choices. MS chapter has names of co's. that might have a trial offer, Then you could have a choice, when you wanted to stretch your legs your Children could watch the skooter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 , I believe you can get those TRX seating systems are available for most wheelchairs because they are manufactured by a separate company (not typically the company that makes the chairs). For example, pride offers the seating system options below, but they only make the chair base, not the power seating system. So, I believe you should be able to get many chair manufacturers to provide that seating system you want. Jay http://www.pridemobility.com/quantum/synergy/Power_Positioning/power_pos itioning.asp <http://www.pridemobility.com/quantum/synergy/Power_Positioning/power_po sitioning.asp> wheelchair Hi all: We are searching for info about a wheelchair (that is similar to the Permobil power chair. We know it is not Bounder, but has tilt, recline, and a seat elevator. MJ will probably need a new power chair yet again as hers is quickly dying. Thanks. caregiver to MJ, SMA type I <A HREF= " http://www.our-sma-angels.com/Margaret/ <http://www.our-sma-angels.com/Margaret/> " > http://www.our-sma-angels.com/Margaret/ <http://www.our-sma-angels.com/Margaret/> </A> MJ's website <A HREF= " http://www.caringbridge.org/ny/mjpurk <http://www.caringbridge.org/ny/mjpurk> " > http://www.caringbridge.com/ny/mjpurk <http://www.caringbridge.com/ny/mjpurk> </A> MJ's journal <A HREF= " http://www.our-sma-angels.com/b4sma <http://www.our-sma-angels.com/b4sma> " > http://www.our-sma-angels.com/b4sma <http://www.our-sma-angels.com/b4sma> </A> MJ's organization <A HREF= " http://www.caringbridge.org/ny/b4sma <http://www.caringbridge.org/ny/b4sma> " > http://www.caringbridge.org/ny/b4sma <http://www.caringbridge.org/ny/b4sma> </A> B4SMA information It's YOUR life - imagine the possibilities! Aren't YOU worth it? -Helaine Iris- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Can't take it in to the shop? How getting somebody to take some pics of the whole mess and posting them on your site. Maybe if we can see it we can give you some ideas. > > my wheelchair went dead after i ran over a cord that was hanging. and a > black piece popped off the end of the cord. my wheelchair will turn on but it > just blinks. DOES ANYONE KNOW WHATS WRONG IM GOING CRAZY > > Thanks, --personal webpage: > http://hometown.aol.com/heaven20seven/index.html > " No pessimist ever discovered the secret of the stars, or sailed to an > uncharted land, or opened a new doorway for the human spirit. " - Helen Keller. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 What type of chair? Did it get switched to manual push mode? Mine says locked when it's in push mode or when i elevate my seat or recline too far.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 Did you call your vendor? L heaven20seven@... wrote: > my wheelchair isnt working. the screen say: " this unit is locked " does > anyone know what that means or how to fix it? im already going crazy! > > Thanks, > J e s s i c a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 My daughter is a type 2 and I had to fight a hard fight with the ins company for about a year before Sierra finaly got her own! Shay Sometimes the situation is only a problem because it is looked at in a certain way. Looked at in another way, the right course of action may be so obvious that the problem no longer exists. de Bono wheelchair Hi, my name is Rene and I live in the Austin area and I have a son, Jake, who has SMA III. We went to his doctor in Dallas on the 2nd of April and they wrote him a prescription for SMO's and a wheelchair. The wheelchair is going to cost more than 2000. The problem is our insurance has a yearly deductible of 2500 and so far we've met 1000 of it. Once we meet the deductible our insurance covers at 100%. I contacted the MDA and found out that you are elgible for 2000 dollars towards either one or the other. They told me they weren't sure it he'd get the help because they usually let the insurance cover first and then MDA would cover what was left up to 2000 but because the $ was going towards the deductible before the insurance has covered anything they weren't sure. I'm nervous to think that he might be denied help. Does anyone have any advice or information for me. Thanks so much, Rene ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 I don't think there is a fight here. The deductible is $2500.00. Deductibles are not negotiable. Lori journey1414@... wrote: > > My daughter is a type 2 and I had to fight a hard fight with the ins > company for about a year before Sierra finaly got her own! > Shay > > > > Sometimes the situation is only a problem because it is looked at in a > certain way. Looked at in another way, the right course of action may > be so obvious that the problem no longer exists. > > de Bono > > wheelchair > > Hi, my name is Rene and I live in the Austin area and I have a son, > Jake, who has SMA III. We went to his doctor in Dallas on the 2nd of > April and they wrote him a prescription for SMO's and a wheelchair. > The wheelchair is going to cost more than 2000. The problem is our > insurance has a yearly deductible of 2500 and so far we've met 1000 of > it. Once we meet the deductible our insurance covers at 100%. I > contacted the MDA and found out that you are elgible for 2000 dollars > towards either one or the other. They told me they weren't sure it > he'd get the help because they usually let the insurance cover first > and then MDA would cover what was left up to 2000 but because the $ > was going towards the deductible before the insurance has covered > anything they weren't sure. I'm nervous to think that he might be > denied help. Does anyone have any advice or information for me. > > Thanks so much, > Rene > > __________________________________________________________ > AOL now offers free email to everyone. Find out more about what's free > from AOL at AOL.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 You would think the MDA wouldn't care as long as the money they gave went to help a MD patient. I think they are saying that this is something you normally have to pay anyway and paying it could benefit every other member on this ins. by way of you not having to pay the deduct if you go have sugery or anything really. I hope they are able to help you. > > Sometimes the situation is only a problem because it is looked at in a certain way. Looked at in another way, the right course of action may be so obvious that the problem no longer exists. > > de Bono > > > > wheelchair > > > Hi, my name is Rene and I live in the Austin area and I have a son, > Jake, who has SMA III. We went to his doctor in Dallas on the 2nd of > April and they wrote him a prescription for SMO's and a wheelchair. > The wheelchair is going to cost more than 2000. The problem is our > insurance has a yearly deductible of 2500 and so far we've met 1000 of > it. Once we meet the deductible our insurance covers at 100%. I > contacted the MDA and found out that you are elgible for 2000 dollars > towards either one or the other. They told me they weren't sure it > he'd get the help because they usually let the insurance cover first > and then MDA would cover what was left up to 2000 but because the $ > was going towards the deductible before the insurance has covered > anything they weren't sure. I'm nervous to think that he might be > denied help. Does anyone have any advice or information for me. > > Thanks so much, > Rene > > > > ______________________________________________________________________ __ > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Yeah, I saw it from that perspective too. the bottom line is to help Jake. That's how I look at it anyway. It wouldn't even be the full 2000 since a portion has already been met. Well thanks for the input:) > > You would think the MDA wouldn't care as long as the money they gave > went to help a MD patient. I think they are saying that this is > something you normally have to pay anyway and paying it could benefit > every other member on this ins. by way of you not having to pay the > deduct if you go have sugery or anything really. I hope they are able > to help you. > > > > > > Sometimes the situation is only a problem because it is looked at > in a certain way. Looked at in another way, the right course of > action may be so obvious that the problem no longer exists. > > > > de Bono > > > > > > > > wheelchair > > > > > > Hi, my name is Rene and I live in the Austin area and I have a son, > > Jake, who has SMA III. We went to his doctor in Dallas on the 2nd > of > > April and they wrote him a prescription for SMO's and a wheelchair. > > The wheelchair is going to cost more than 2000. The problem is our > > insurance has a yearly deductible of 2500 and so far we've met 1000 > of > > it. Once we meet the deductible our insurance covers at 100%. I > > contacted the MDA and found out that you are elgible for 2000 > dollars > > towards either one or the other. They told me they weren't sure it > > he'd get the help because they usually let the insurance cover > first > > and then MDA would cover what was left up to 2000 but because the $ > > was going towards the deductible before the insurance has covered > > anything they weren't sure. I'm nervous to think that he might be > > denied help. Does anyone have any advice or information for me. > > > > Thanks so much, > > Rene > > > > > > > > > _____________________________________________________________________ _ > __ > > AOL now offers free email to everyone. Find out more about what's > free from AOL at AOL.com. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Some people have no insurance at all so I think MDA puts them as a priority and that is why they want people to use their insurance first. If insurance doesn't cover, they are happy to help. Terry W <tntw6@...> wrote: You would think the MDA wouldn't care as long as the money they gave went to help a MD patient. I think they are saying that this is something you normally have to pay anyway and paying it could benefit every other member on this ins. by way of you not having to pay the deduct if you go have sugery or anything really. I hope they are able to help you. > > Sometimes the situation is only a problem because it is looked at in a certain way. Looked at in another way, the right course of action may be so obvious that the problem no longer exists. > > de Bono > > > > wheelchair > > > Hi, my name is Rene and I live in the Austin area and I have a son, > Jake, who has SMA III. We went to his doctor in Dallas on the 2nd of > April and they wrote him a prescription for SMO's and a wheelchair. > The wheelchair is going to cost more than 2000. The problem is our > insurance has a yearly deductible of 2500 and so far we've met 1000 of > it. Once we meet the deductible our insurance covers at 100%. I > contacted the MDA and found out that you are elgible for 2000 dollars > towards either one or the other. They told me they weren't sure it > he'd get the help because they usually let the insurance cover first > and then MDA would cover what was left up to 2000 but because the $ > was going towards the deductible before the insurance has covered > anything they weren't sure. I'm nervous to think that he might be > denied help. Does anyone have any advice or information for me. > > Thanks so much, > Rene > > > > ______________________________________________________________________ __ > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Hi Rene, Maybe I was given incorrect information from our local MDA clinic, but it is my understanding the $2,000 was to be used for ANY out of pocket expsenses for wheelchair or orthotics. Anything insurance didn't pay -- deductible or co insurance. Since Jack's cough assist ended hitting the deductable, his chair will cost us $300 (10% co insurance), so we won't be using the MDA money. Our reasoning is that somewhere else down the line a chair might end up costing us a lot more out of pocket than $300. Next time I talk to our clinic I will ask them to clarify this. I hope I wasn't told wrong. Good luck! Becky Jack, type III twin sister Delaney and big sister Ava Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Its 2k per person, insurance or not. The maney they get is donated mostly, for anyone with MD so it goes to anyone. I hope they help you out. Terry > You would think the MDA wouldn't care as long as the money they gave > went to help a MD patient. I think they are saying that this is > something you normally have to pay anyway and paying it could benefit > every other member on this ins. by way of you not having to pay the > deduct if you go have sugery or anything really. I hope they are able > to help you. > > > > > > Sometimes the situation is only a problem because it is looked at > in a certain way. Looked at in another way, the right course of > action may be so obvious that the problem no longer exists. > > > > de Bono > > > > > > > > wheelchair > > > > > > Hi, my name is Rene and I live in the Austin area and I have a son, > > Jake, who has SMA III. We went to his doctor in Dallas on the 2nd > of > > April and they wrote him a prescription for SMO's and a wheelchair. > > The wheelchair is going to cost more than 2000. The problem is our > > insurance has a yearly deductible of 2500 and so far we've met 1000 > of > > it. Once we meet the deductible our insurance covers at 100%. I > > contacted the MDA and found out that you are elgible for 2000 > dollars > > towards either one or the other. They told me they weren't sure it > > he'd get the help because they usually let the insurance cover > first > > and then MDA would cover what was left up to 2000 but because the $ > > was going towards the deductible before the insurance has covered > > anything they weren't sure. I'm nervous to think that he might be > > denied help. Does anyone have any advice or information for me. > > > > Thanks so much, > > Rene > > > > > > > > > ______________________________________________________________________ > __ > > AOL now offers free email to everyone. Find out more about what's > free from AOL at AOL.com. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 The theory behind insurance deductibles is so that you always have to pay a little bit for medical service, and therefore may be more prudent about using medical treatments. The insurance companies theorize that if all medical service was completely free, then people would go hog wild and get anything they wanted even if they don't really need it. If you always have to pay something, but not enough to be a big burden, then supposedly you will be more responsible about the services you use. It used to be that a visit to the MDA clinic was completely free because the MDA covered any expenses your insurance company didn't, including deductibles. But, the insurance companies forced the MDA to change so they wouldn't cover deductibles anymore. Insurance companies want you to feel a little financial " bite " whenever you go to the doctor just so you may be less likely to go unless you really need it. However, my family's experience has been that most DME vendors can get around this by billing the insurance company first and telling them we will pay the deductible. Once insurance pays their portion, the vendor will bill MDA up to $2,000. The local MDA office usually doesn't care about insurance company rules and they will simply pay the vendor. Then, if there is any balance still outstanding, you can use other charities (Kiwanis, Wheels for Kids, etc.), but you have to keep it secret that the MDA chipped in any amount. Most charities want to deduct from their contribution any amount contributed by another charity. I hope that helps. > > Hi, my name is Rene and I live in the Austin area and I have a son, > Jake, who has SMA III. We went to his doctor in Dallas on the 2nd of > April and they wrote him a prescription for SMO's and a wheelchair. > The wheelchair is going to cost more than 2000. The problem is our > insurance has a yearly deductible of 2500 and so far we've met 1000 of > it. Once we meet the deductible our insurance covers at 100%. I > contacted the MDA and found out that you are elgible for 2000 dollars > towards either one or the other. They told me they weren't sure it > he'd get the help because they usually let the insurance cover first > and then MDA would cover what was left up to 2000 but because the $ > was going towards the deductible before the insurance has covered > anything they weren't sure. I'm nervous to think that he might be > denied help. Does anyone have any advice or information for me. > > Thanks so much, > Rene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 I was wondering if anyone knew where I could find a CHEAP peds wheelchair. My daughter has pauciarticular jra in her knee. She is having a really bad flare up. She is having problems getting around and has to use crutches. The problem is her school would rather her use a wheelchair. I'm not sure their reasoning but she seems to think it would be easier to carry stuff and get around. Please let me know if you know where I could find one. Nicki Gabby 7 (pauci. Knee & hand) Dessie 4 (pauci. ankle) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 I am pretty sure if the school is recommending she use a wheelchair, they should be providing it. Of course then you get into the whose is it discussion for weekends, holidays, etc. Just about every state in the US (I shouldn't assume that is where you are from, I guess), has an Assistive Technology program, some states have equipment loan programs, some have recycling programs. Do a search for Durable Medical Equipment, wheelchairs, equipment recycling or resale for your state or surounding area and you may be surprised to find something. Also w/c vendors, medical supply often know of families looking to get rid of equipment, or know of regional sales reps who have floor models that need to be sold, it is worth calling them for that. Good luck, there are a lot of websites with wheelchairs also, just make sure that the one you get has a set of large wheels that she can reach, alot of lightweight travel wheelchairs now have 4 tiny wheels so the person riding can't self propel or steer with their hands. Good Luck, and Jana 5 y.o. systemic JRA From: nicolestiltner <nicolestiltner@...> Subject: Wheelchair Date: Wednesday, April 1, 2009, 10:23 PM I was wondering if anyone knew where I could find a CHEAP peds wheelchair. My daughter has pauciarticular jra in her knee. She is having a really bad flare up. She is having problems getting around and has to use crutches. The problem is her school would rather her use a wheelchair. I'm not sure their reasoning but she seems to think it would be easier to carry stuff and get around. Please let me know if you know where I could find one. Nicki Gabby 7 (pauci. Knee & hand) Dessie 4 (pauci. ankle) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Likely they want her to use a wheelchair because of libility feeling it's better/safer than crutches.... gee.. i dont get how places can tell you WHat to use but than again since she is little.. i suppose it's somewhat logical. It would worry me with them providing one unless they truly got one for her that is proper.. that is with a good cushion that will take pressure off of her joints and not some old iron dinosaur that can lead to greater stiffness/flare in the joints...... Insurance can pay but it can be a REAL pain to get Durable medical Equipment. I'm dealing with a place called Preferred Homecare or is Healthcare. They are AWESOME. They have a whole entire form they use for measurement and they have the person visit a OT and or PT specialist that does this kind of fitting as well to meet the needs of a client. They do all of this and than submit it to the insurance for approval so I would suggest looking them up and seeing if they are in your area as they are in a few different states. Other places should work in a similar way. You should avoid places that dont because I got messed up with getting my first power chair that way before. They didnt do it properly and I got something that caused me more pain in the end... =/ I also had problems with a vendor that had a PT working for htem.. they were not helpful either. However the rehab specialist at Prefered homecare/healthcare is putting a new rigid removable back on my wheelchair and ordering me a new cushion and she showed me all of the things that they normally do and it's really amazing. Anyways, just make sure that if the school does provide the chair, that it's not going to be something that increases your daughters pain and issues. I have used a older manual chair before and it caused major flares in the back, hips and not to mention hands from pushing but now I have a light weight 23 or25 pound purple wheelchair with pneumatic street tires that rolls with ease along with a seat cushon made to take pressure off of my tail bone and thats all about to be improved more. Sometimes on cragislist, I see people salling old pediatric wheelchairs and disabled kids strollers for bigger kids once in a long while when their kids have outgrown them which can sometimes be useful but I rarely see that. Also ebay too but that has its own pros and cons. If your insurance will pay for it, one of the best pediatric chair companies out there is Quickie who makes Zippie chairs for kids and they are growable and made just for their size. posture, etc etc etc... Issadora On Wed, Apr 1, 2009 at 7:57 PM, Farrington <lesliesufarr@...>wrote: > I am pretty sure if the school is recommending she use a wheelchair, > they should be providing it. Of course then you get into the whose is it > discussion for weekends, holidays, etc. > Just about every state in the US (I shouldn't assume that is where you are > from, I guess), has an Assistive Technology program, some states have > equipment loan programs, some have recycling programs. Do a search for > Durable Medical Equipment, wheelchairs, equipment recycling or resale for > your state or surounding area and you may be surprised to find something. > Also w/c vendors, medical supply often know of families looking to get rid > of equipment, or know of regional sales reps who have floor models that need > to be sold, it is worth calling them for that. > Good luck, there are a lot of websites with wheelchairs also, just make > sure that the one you get has a set of large wheels that she can reach, alot > of lightweight travel wheelchairs now have 4 tiny wheels so the person > riding can't self propel or steer with their hands. > Good Luck, and Jana 5 y.o. systemic JRA > > > > From: nicolestiltner <nicolestiltner@...<nicolestiltner%40> > > > Subject: Wheelchair > < %40> > Date: Wednesday, April 1, 2009, 10:23 PM > > > I was wondering if anyone knew where I could find a CHEAP peds wheelchair. > My daughter has pauciarticular jra in her knee. She is having a really bad > flare up. She is having problems getting around and has to use crutches. The > problem is her school would rather her use a wheelchair. I'm not sure their > reasoning but she seems to think it would be easier to carry stuff and get > around. Please let me know if you know where I could find one. > > Nicki > Gabby 7 (pauci. Knee & hand) > Dessie 4 (pauci. ankle) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Hi Nicki, Since the School said it would be easier/ Better for her to use a Wheelchair. I would contact the Dr and let him or her know about this. If Insurance is paying for it then the Dr would have to write a Prescrption for you to get one through Insurance. Most Children's Hospitals have a Social Services which help you with the Information and getting to the right place for a Wheelchair. You can also look around in the Phone book for Children's Advocates as they know about help for Children. Also contact your Local Arthritis Foundation as they may have some in storage. Shop around Thrift stores and Flea Markets as well. Since the School has sources You may want to contact the District and ask about Wheelchairs as when a Person uses them and do not need them anymore or grows out of it they either donate them or sell them. Also check with Churches as some do donate to Churches, As with any Medical equipt. They are in good shape and can be reused.like a wheelchair. When my daughter was in a wheelchair and in school. It made a big difference for her getting around the school. I am not sure what State you are in so I can not tell you which way to go as to what place to call. If you say what state you are in some of the groups may know which place that would be best to help. Contact the Dr first though as He or She will have to write out a Prescription to help you though. Heck maybe he may know where you can go to get one other than through Insurance. I know here we donate wheelchairs to those who need them or to the Drs. My Mother in law had one and when she passed away. I donated it to the Local Grocery Store to help others in the neighborhood to shop. This was wayyyyyyyy before the Store scooters came along. Robbin **************New Low Prices on Dell Laptops – Starting at $399 (http://pr.atwola.com/promoclk/100126575x1220433304x1201394525/aol?redir=http:%2\ F%2Fad.doubl eclick.net%2Fclk%3B213540718%3B35046385%3Be) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Have to say I agree with e on getting the meds readjusted, or trying something new. Plus with arthritis in her hands, I would think crutches are not great for that for any length of time. Before you go the wheelchair route, maybe call the dr and see what he/she could recommend. If a chair is necessary, couldn't the school help locate one free or for lower cost? Just a thought, Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of bound for london Sent: Wednesday, April 01, 2009 9:43 PM Subject: Re: Wheelchair If you have medical insurance consult with them. They have agreements with providers of Durable Medical Equipment to keep the cost low. My big concern is the need for the wheelchair. My daughter has used one but we then amped up all her meds to get the flare under control. I'm not saying that you can always prevent the use of a wheelchair but the need to get the flare under control to prevent permanent joint damage. Is she on a biologic, done joint injections, etc? Also if she needs a wheelchair the DME can get the correct one, with the correct adaptations that fit her best. Depending on her size it can make all the difference. e, mom to 'joe' 22 poly/lupus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Thank you all for your responces.Let me clear a few things up. My daughter is on methotrexate and motrin. We go back to the doctor this coming wednesday 4/8/09. She has had her knee drained and injected before and we anticipate that happening again this time. I don't know what your rheumes tell you but mine keeps stressing mobility but right now my daughter can't even walk without assistants. I'm afraid that he would not right a prescription for a wheelchair. He really didn't even want me to take her out of gym during this flare up but I couldn't ask a child who can barley walk to try to participate in gym. We don't like her having to use the crutches because they are so uncomfortable and we do worry about it flaring up her hand or worse her falling and hurting herself. Plus she does not like having to rely on everyone else to do things like carry her books, lunch tray and open doors for her. The school will profide an adult wheelchair but it is HUGE and doesn't roll well. It doesn't free her up to be self relient. I don't blame the school for asking us to do the wheelchair. They have went out of their way to be helpful with my daughters. Also I live in Virginia. Sorry I didn't post that to begin with it kinda slipped my mind. Nicki Gabby 7 (pauci. knee and hand) Dessie 4 (pauci. ankle) > > Hi Nicki, > Since the School said it would be easier/ Better for her to use a > Wheelchair. I would contact the Dr and let him or her know about this. If Insurance > is paying for it then the Dr would have to write a Prescrption for you to > get one through Insurance. Most Children's Hospitals have a Social Services > which help you with the Information and getting to the right place for a > Wheelchair. You can also look around in the Phone book for Children's Advocates as > they know about help for Children. Also contact your Local Arthritis > Foundation as they may have some in storage. Shop around Thrift stores and Flea > Markets as well. > Since the School has sources You may want to contact the District and ask > about Wheelchairs as when a Person uses them and do not need them anymore or > grows out of it they either donate them or sell them. Also check with > Churches as some do donate to Churches, As with any Medical equipt. They are in > good shape and can be reused.like a wheelchair. > When my daughter was in a wheelchair and in school. It made a big > difference for her getting around the school. I am not sure what State you are in so > I can not tell you which way to go as to what place to call. If you say what > state you are in some of the groups may know which place that would be best > to help. Contact the Dr first though as He or She will have to write out a > Prescription to help you though. Heck maybe he may know where you can go to get > one other than through Insurance. I know here we donate wheelchairs to those > who need them or to the Drs. My Mother in law had one and when she passed > away. I donated it to the Local Grocery Store to help others in the > neighborhood to shop. This was wayyyyyyyy before the Store scooters came along. > Robbin > **************New Low Prices on Dell Laptops †" Starting at $399 > (http://pr.atwola.com/promoclk/100126575x1220433304x1201394525/aol?redir=http:%2\ F%2Fad.doubl > eclick.net%2Fclk%3B213540718%3B35046385%3Be) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 It is so great the rheumy stresses mobility. You are right, during a flare they do sometimes need to slow down and take it easy. The wheelchair will make it easy to get around school and deal with the day to day when she is flaring. Glad you’re next appt is soon and I hope the dr can provide that relief she needs. Sorry if my last post sounded like you weren’t doing the right things, of course you are. I thought of that after I reread what I posted. Sometimes the meaning gets lost in the post. Sorry about that! Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of nicolestiltner Sent: Thursday, April 02, 2009 10:45 AM Subject: Re: Wheelchair Thank you all for your responces.Let me clear a few things up. My daughter is on methotrexate and motrin. We go back to the doctor this coming wednesday 4/8/09. She has had her knee drained and injected before and we anticipate that happening again this time. I don't know what your rheumes tell you but mine keeps stressing mobility but right now my daughter can't even walk without assistants. I'm afraid that he would not right a prescription for a wheelchair. He really didn't even want me to take her out of gym during this flare up but I couldn't ask a child who can barley walk to try to participate in gym. We don't like her having to use the crutches because they are so uncomfortable and we do worry about it flaring up her hand or worse her falling and hurting herself. Plus she does not like having to rely on everyone else to do things like carry her books, lunch tray and open doors for her. The school will profide an adult wheelchair but it is HUGE and doesn't roll well. It doesn't free her up to be self relient. I don't blame the school for asking us to do the wheelchair. They have went out of their way to be helpful with my daughters. Also I live in Virginia. Sorry I didn't post that to begin with it kinda slipped my mind. Nicki Gabby 7 (pauci. knee and hand) Dessie 4 (pauci. ankle) > > Hi Nicki, > Since the School said it would be easier/ Better for her to use a > Wheelchair. I would contact the Dr and let him or her know about this. If Insurance > is paying for it then the Dr would have to write a Prescrption for you to > get one through Insurance. Most Children's Hospitals have a Social Services > which help you with the Information and getting to the right place for a > Wheelchair. You can also look around in the Phone book for Children's Advocates as > they know about help for Children. Also contact your Local Arthritis > Foundation as they may have some in storage. Shop around Thrift stores and Flea > Markets as well. > Since the School has sources You may want to contact the District and ask > about Wheelchairs as when a Person uses them and do not need them anymore or > grows out of it they either donate them or sell them. Also check with > Churches as some do donate to Churches, As with any Medical equipt. They are in > good shape and can be reused.like a wheelchair. > When my daughter was in a wheelchair and in school. It made a big > difference for her getting around the school. I am not sure what State you are in so > I can not tell you which way to go as to what place to call. If you say what > state you are in some of the groups may know which place that would be best > to help. Contact the Dr first though as He or She will have to write out a > Prescription to help you though. Heck maybe he may know where you can go to get > one other than through Insurance. I know here we donate wheelchairs to those > who need them or to the Drs. My Mother in law had one and when she passed > away. I donated it to the Local Grocery Store to help others in the > neighborhood to shop. This was wayyyyyyyy before the Store scooters came along. > Robbin > **************New Low Prices on Dell Laptops †" Starting at $399 > (http://pr.atwola.com/promoclk/100126575x1220433304x1201394525/aol?redir=http:%2\ F%2Fad.doubl <http://pr.atwola.com/promoclk/100126575x1220433304x1201394525/aol?redir=http:%2\ F%2Fad.doubl> > eclick.net%2Fclk%3B213540718%3B35046385%3Be) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Probably aslo you need to address that your doctor needs to change her current medicines...It looks like that you are daughter is not getting a much relief from her currect meds. My daugher were in the same situation and as soon as we changed her meds , we noticed a huge difference. It could be a very hard emotionnally to go to the next level of drugs ( Kineret or Enbrel, humira), but it worths to try to get the relieve and mobilty. ________________________________ From: " Tepper, Michele " <MTepper@...> Sent: Thursday, April 2, 2009 12:07:42 PM Subject: RE: Wheelchair It is so great the rheumy stresses mobility. You are right, during a flare they do sometimes need to slow down and take it easy. The wheelchair will make it easy to get around school and deal with the day to day when she is flaring. Glad you’re next appt is soon and I hope the dr can provide that relief she needs. Sorry if my last post sounded like you weren’t doing the right things, of course you are. I thought of that after I reread what I posted. Sometimes the meaning gets lost in the post. Sorry about that! Michele ( 21, spondy) ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of nicolestiltner Sent: Thursday, April 02, 2009 10:45 AM @group s.com Subject: Re: Wheelchair Thank you all for your responces.Let me clear a few things up. My daughter is on methotrexate and motrin. We go back to the doctor this coming wednesday 4/8/09. She has had her knee drained and injected before and we anticipate that happening again this time. I don't know what your rheumes tell you but mine keeps stressing mobility but right now my daughter can't even walk without assistants. I'm afraid that he would not right a prescription for a wheelchair. He really didn't even want me to take her out of gym during this flare up but I couldn't ask a child who can barley walk to try to participate in gym. We don't like her having to use the crutches because they are so uncomfortable and we do worry about it flaring up her hand or worse her falling and hurting herself. Plus she does not like having to rely on everyone else to do things like carry her books, lunch tray and open doors for her. The school will profide an adult wheelchair but it is HUGE and doesn't roll well. It doesn't free her up to be self relient. I don't blame the school for asking us to do the wheelchair. They have went out of their way to be helpful with my daughters. Also I live in Virginia. Sorry I didn't post that to begin with it kinda slipped my mind. Nicki Gabby 7 (pauci. knee and hand) Dessie 4 (pauci. ankle) > > Hi Nicki, > Since the School said it would be easier/ Better for her to use a > Wheelchair. I would contact the Dr and let him or her know about this. If Insurance > is paying for it then the Dr would have to write a Prescrption for you to > get one through Insurance. Most Children's Hospitals have a Social Services > which help you with the Information and getting to the right place for a > Wheelchair. You can also look around in the Phone book for Children's Advocates as > they know about help for Children. Also contact your Local Arthritis > Foundation as they may have some in storage. Shop around Thrift stores and Flea > Markets as well. > Since the School has sources You may want to contact the District and ask > about Wheelchairs as when a Person uses them and do not need them anymore or > grows out of it they either donate them or sell them. Also check with > Churches as some do donate to Churches, As with any Medical equipt. They are in > good shape and can be reused.like a wheelchair. > When my daughter was in a wheelchair and in school. It made a big > difference for her getting around the school. I am not sure what State you are in so > I can not tell you which way to go as to what place to call. If you say what > state you are in some of the groups may know which place that would be best > to help. Contact the Dr first though as He or She will have to write out a > Prescription to help you though. Heck maybe he may know where you can go to get > one other than through Insurance. I know here we donate wheelchairs to those > who need them or to the Drs. My Mother in law had one and when she passed > away. I donated it to the Local Grocery Store to help others in the > neighborhood to shop. This was wayyyyyyyy before the Store scooters came along. > Robbin > ************ **New Low Prices on Dell Laptops †" Starting at $399 > (http://pr.atwola. com/promoclk/ 100126575x122043 3304x1201394525/ aol?redir= http:%2F% 2Fad.doubl <http://pr.atwola. com/promoclk/ 100126575x122043 3304x1201394525/ aol?redir= http:%2F% 2Fad.doubl> > eclick.net%2Fclk% 3B213540718% 3B35046385% 3Be) > > > Quote Link to comment Share on other sites More sharing options...
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