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DO I NEED A WHEELCHAIR????? I CAN'T STAND ANOTHER MOMENT LIVING THE WAY I AM

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    DO I NEED A WHEELCHAIR????? I CAN'T STAND ANOTHER MOMENT LIVING THE WAY I AM

    HI All---Seeking input from those in wheelchairs. How did you know and decide when it was the time for one? Do you use it only outside of the house and in the house walk with a walker?

    I have SPMS and am living with a terrible amount of pain, related to walking. My feet and ankles want to be in unnatural positions due to foot drop and the degradation of other nerves that line things up properly. Although I've been working with an MS Physical Therapist, we are not able to get me walking freely in a new perfect fit pair of AFO's. Although it's been one tiny step at a time, the AFO's cause more pain that I get from walking without them. It seems that my legs' intention to be in improper positions are stronger than my work to get various muscles strengthened.

    Everything is so very difficult. Showering and dressing, making our bed, tidying up if I decide to, are just so hard to do. I am still going to my volunteer jobs and doing as much in my sewing room as I can, and knitting as much as I can. But, I cannot believe how much work it all is and how painful things can get. Feet, ankles, calves, knees, hips, lower back, ouch. Arms are just weak, and we are working on that too. In addition to PT, I have had an OT in the house once a week for a while, to teach me efficient ways of doing things. We'd already simplified and downsized our home, and she was impressed with that.

    I am 61 and I feel as if the best days of my life are behind me now. And, all I see when I look at the road ahead is me pushing and pushing and pushing.

    #2
    I started using a scooter outside the house, including in my office which was in a large high-rise building. I kept using a walker and forearm crutches at home for a long time.

    I started using a wheelchair in the house when it got to the point I had stopped doing things because it was too hard. My husband told me it was stressful for the whole family to watch me struggle. He knew I hated the thought of a wheelchair as a symbol of being further down that slippery slope of progression. The progression was happening whether I accepted it or not.

    Since you are working with physical and occupational therapists, get their input. Perhaps a part-time wheelchair is the answer.

    Comment


      #3
      Sorry HereIam, to hear you are in pain and at your wit's end. I don't have a power w/c, but I'm also SP and foresee getting one myself in the future.

      There is a sticky thread you will want to read about the AT ACT program. http://www.msworld.org/forum/showthr...-in-Your-State

      It states: "AT Act programs help people to try out devices before they buy them by offering demonstrations an/or loans of equipment. They also have reutilization programs to help people get hooked up with used or refurbished equipment at little or no cost. If you do have to purchase something, look for your state's alternative loan programs where you can apply for a low-interest or 0% interest cash loan for the AT device, home modification or vehicle that you need."

      Seems to me this would be the way to go - trying a chair out before you decide to buy. No need for you to be in so much pain while standing. A power chair can liberate you and make your life much easier!

      If you decide to go this route, fill us in on how it's going. A lot of us might be interested (including me )

      Meanwhile take care of yourself!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        hi I to have spms have foot drop.im 56 every thing is a challenge.some days I just stay in and watch tv.i was a workaholic when I was working.i use walker inside and a power wheelchair outside the home it has helped me a lot.it helps me with what little energy I have

        Comment


          #5
          Thank you all for sharing your experiences and ideas.

          So, if you have a scooter or a power chair.... how the heck do you take it along with you? For me it's a big enough challenge to get the walker out of the back of my SUV.

          KMallory you mentioned you started using a wheelchair in the house when things became just too hard. I'm sorry you are there, but I understand. I think I am past there but I'm still pushing on and so live with an awful lot of pain.

          I never really thought of what it is about MS that puts one in a wheelchair. I thought it was something like your legs got paralyzed or went jelly. It never occurred to me that walking would simply become too painful. I continue to walk, with my walker, hoping to build up strength, but there are indications that too many of the nerves necessary for healthy walking are just done.... so I get pain.

          I'll carry on with my PT and see what happens. The only way I'll have a chance of continuing to walk is if we can get me walking with both AFO's. That's quite a challenge, much to my surprise. I had a total knee replacement on my right knee 3 years ago, and wearing the AFO brings on unspeakable pain to that knee replacement and also to all of my leg muscles and ankle joints. Since my feet no longer evert as they should, I've been walking with my toes pointing inwards for a long time. With the AFO working to get those feet straight, it is a painful disaster. So, first we are starting with a me wearing stiff sturdy running shoes that keep my feet firmly in place. It'll be one thing at a time.

          Comment


            #6
            hereiam,we have a mini van with a lift that comes out the back,and we take care of mother in law she has a walker so van comes handy

            Comment


              #7
              I believe most MS patients wait too long before using mobility equipment or upgrading to the next type of equipment. I'm not thrilled about using a wheelchair, but I am thrilled to have a tool to help me improve my quality of life. Using a wheelchair has has allowed me to experience things in life that I had previously quit doing.


              Power chair vs. Manual Wheelchair
              I have both a types and prefer my manual wheelchair over the powered. The manual wheelchair is so much easier to transport and use in tight places, but I have the arm strength to operate it.

              The biggest question probably is do you have enough arm strength to push a manual wheelchair or do you need a powerchair? Your occupational and physical therapist should be able to give you some idea if you are physically capbale of safely operating a manual wheelchair. There are also mobility specialists in your area that you should call for help. They will help you identifiy your needs and what is best for your unique situation. Anyone that helps you select your chair should: evaluate you and your daily living needs, evaluate and measure your body and your ability to properly use a wheelchair, help determine the absolute best solution(s) for your needs, complete all the medical and insurance paperwork, deliver the equipment and verify the fit & function is correct and provide an acceptable level of post-sales support.

              To help them you need to consider questions similar to:
              What goals, activities and where will you use the wheelchair? What is my primary use of the wheelchair, where will this and where will this occur? Home, work, everywhere outside the home? Do you need your wheelchair to check the mail, walk your dog, or do other regular tasks? How will you transport the wheelchair? Do you drive or will your wheelchair be your primary mode of transportation? Do you want to enter wheelchair races? What are your short-term and foreseeable needs? Having MS, your needs in 4 years may be completely different than today. You don't need a crystal ball, but you may expect to use your wheelchair 40% today and maybe 50% over the next few years.

              The answers to these questions will help determine if you need a $200 wheelchair or $40,000 permobil chair. The more detailed question is what symptom(s) require you to get a chair? Are you a fall risk? Do you have a bad gait? Are your legs too weak? Is your endurance lacking? Do you suffer from fatigue? All of these symptoms will help dictate what type of chair you get and also help fill out the 'Letter of Medical Necessity' (LMN) that your physician will need to sign. The LMN is the form that tells the insurance company all about your health conditions that require you to have a chair, and why the chair you selected helps you meet these needs. For example: You need solid core tires ($200 upgrade option) because you lack the motor skills, or strength, or ability to bend over, to maintain the proper air pressure in your tires. You need an ultralight chair because while you have the strength to propel yourself you are limited to lifting 25 lbs or whatever.

              Once you think you know what you need ask the mobility specialist to loan you either a powerchair or wheelchair similar to what you believe you need. That will allow you to kick the tires and see if you actually made the correct choice or if changes need to be made.

              There's no doubt that a powerchair requires less effort to maneuver, but they weigh a ton and require much more to transport. If you end up getting a powerchair they do make carriers that you can attach to the towing hitch of most vehicles. The heaviest powerchairs will require a special towing hitch (up to Class III) or will need to be placed inside the vehicle (like a minivan), but you are not there now.

              Powerchairs can do everything from riding in sand to move you while you are in a standing position. They can lift you up so you can cook and reach objects in cabinets. Heck, there are even powerchairs specifically designed to play golf with. Again, the solution needs to match your needs or wants.

              For now, my powerchair sits in the garage and I have to remember to use it to maintain the tires and batteries. I have and use titanium, rigid, ultralight, manual wheelchair because they are the lightest and most efficient wheelchairs on the normal market. These are the kinds of chairs that full-time users prefer as they are custom made to perfectly fit your body. In comparison, a wheelchair you get at target or walmart will weigh anywhere from 38-60 lbs. Lightweight wheelchairs range from about 29-37 lbs and ultralights are under 29 lbs. My ultralight weighs in about 11 lbs so you can see there's a tremendous difference (also in cost). Compare that to most rollators that weigh between 15-20 lbs.

              Based on your current vehicle a folding wheelchair seems like a better option so you can haul it without a trailer. Folding wheelchairs weigh from 2-5 lbs more than a rigid chair because there are extra parts and the frame has to be reinforced to accommodate for the folding mechanism. There are folding ultralights in the 15 lb range so still very comparable to a rollator in weight and potentially a lower space requirement than the rollator.

              Ultimately only you will be using the chair, so make sure your needs are met and everything else will work itself out. I love my wheelchair, but only because it meets my needs, not some of my needs, but all of my needs. My wheelchair has never let me down, nor have I needed a feature or function that I did not have. Of course, I am slightly OCD and probably even more insane, but it does, at times, work to my advantage and this is one of those times.


              One word about your insurance, do you have to use their Durable Medical Equipment (DME) provider to get the payment assistance? My insurance company required that I used their own DME providers. I called dozens of DME providers before finding one that would sell me a chair. That was an unpleasant multi-day experience.Then you find one and realize their providers all use the MSRP for wheelchairs. For example, the DME provider billed my insurance company $6,400 for my chair. The identical chair started at $2,600 at SpinLife. Despite the much higher price, the chair was cheaper from the DME provider (after the insurance discount) than SpinLife. You will need to research and calculate what the best decision for you is (get your mobility specialist to help you).

              Note: For people that are in shock at the $6,400 number, this is not a chair you use one-time/week, but your main source of transportation, and opportunity to interact with the world. For example, when compared to an off-the-shelf wheelchair, custom wheelchairs will measure: Seat Depth, Hanger Angle, Front Seat to Floor, Rear Seat to Floor, Back Height, Camber, Backrest angle, center of gravity, seat width, footrest width, etc, etc. While more expensive, your wheelchair should fit you like a glove and making pushing, seating and every other wheelchair aspect more comfortable.

              You also need to know how often the insurance company will help you purchase a chair. For most companies, they will only purchase a chair every 5 years. If you buy a lower quality chair, it may need to be replaced much sooner than 5 years. The same with service, if you are being charged for every service, that expense needs to be factored in. One company would only provide a 90-day labor warranty, but the other company would provide free 5-year labor (the life of the chair). Once you have a company, they should send someone to your home to perform a needs assessment and obtain measurements.


              Finding the right solution that fits you, and meets your needs is extremely important. Your abilities and needs are unique to you, so matching them to the correct wheelchair is not only a science, but an art form. I believe the more effort you put into this process, the better the outcome. .
              Some powered wheelchairs run $40,000 (more dropped jaws) and the insurance company isn't just going to pass out $40,000 without checking and double-checking your needs and purchase. The cost of a manual wheelchair is normally going to run from $200 upwards to $8,000, depending on the wheelchair materials, whether it is custom or stock and what options you choose. You can buy a titanium frame from Ebay for under $1,000, but it won't be customized especially for your body (can be close if you wait), you won't have someone local to call for help, fit you or answer your questions, and no help from your insurance company.

              Please let me know if you have additional questions.

              Comment


                #8
                Marco, thank you so very much for all of the info on wheelchairs and transporting them and really everything I need to know!!!

                I have a manual chair that I've used for when we travel, it's about 5 years old. It has been beat to he$% by various airlines and I didn't love it in the first place.

                I would guess I am one of those people who has already waited too long. As I went through another round of unbelievable painful PT this morning I thought "Why am I doing this, so I can sorta kinda walk a small distance for another 6 months?" It's insanity. I intend to go through with my five weeks of torture and see if at the end of it I am able to walk with the AFO's. If I cannot, then my time is up, and I will be looking for the right wheelchair.

                I would be able to have a manual, my arm strength is good enough and would improve. I have looked at and liked the Quickie lightweights. They are very easy to roll and have streamlined parts. I don't need the big clunky foot rests, a strap is what I find more comfortable. I don't need the arm rests, as they get in the way more than anything else. So, I have some ideas and will have to do a lot of testing and research before I commit.

                I really just cannot stand another day of the pain I get from walking. Too many of the major nerves in my legs have left the building, and the ones still working are just not enough. The pain in my ankles resulting from my feet no longer everting is ridiculous.... it's all ridiculous. I'm afraid of becoming a drug addict before this madness stops, although I am really disciplined with my meds, sticking only to what is prescribed no matter how bad it all is. And, it is bad. And, I am tired. By using a wheelchair outside of the house, I believe I will have the energy to walk when I am inside the house. I'll be able to stand longer at my cutting table (I am a quilter), I'll be able to stand longer in the yard with my dogs (3 of them!).

                Curious, was it pain that put you in a chair??

                Comment


                  #9
                  Originally posted by HereIam View Post
                  Curious, was it pain that put you in a chair??
                  \

                  I am glad you asked. I forgot to volunteer the information because I wanted to ask you to try one more thing before accepting the wheelchair.

                  I was in nonstop pain, falling down, poor gait, and barely had leg strength.

                  My problem turned out to be extreme spasticity. My muscles were pulling against each other that I was in pain, they were so tight their movement was restricted and were so busy fighting each other that I could barely use them.

                  I had seen dozens of medical professionals, neurologists with national recognition, PT/OTs, etc and most of them assumed MS had gotten to my legs. Finally, I got to a physical medicine & rehab (PM&R) or Physiatrist that correctly diagnose the spasticity. I did a baclofen trial injection (basically an epidural where they inject baclofen into your intrathecal space) and that started to take the spasticity away. When the spasticity left so did the symptoms that put me in a wheelchair.

                  Based on your earlier comments I believe you are extremely astute and you know your body better than anyone. Your situation just sounded a LOT like my own and my baclofen pump changed my life. Woohoo!!!

                  The way I describe spasticity is as follows
                  - Take a normal rope and it's flexible just like a normal muscle. Muscles can bend all kinds of ways.
                  - Now if you tighten the rope enough someone can walk on it because it's completely rigid. That is a good picture of what extreme spasticity does - it makes your muscles so rigid that they are no longer flexible. The two sides of the muscles are pulling so hard that you cannot flex or extend emulating weakness. That much tension also causes you chronic pain.

                  Have you ever taken baclofen, tizanidine, soma or something similar? If not, please consider talking to your neurologist about them. If you get any relief that's a good sign and you'll need to work with your neurologist to increase the dose over time. Honestly, once you get towards the upper range of oral baclofen life will probably suck ... the side effects aren't all the fun and you get loopy. That's where a baclofen pump could come in.


                  Waiting for your response ...

                  Comment


                    #10
                    Hi Marco and thank you for thinking for and of me, I so appreciate it.

                    Yes, about 4 years ago, we did the baclofen oral trial, titrating up to a level that should kill any spasticity.... and all I got was drunk and dizzy with the underlying inability to walk pain free. That was fun. At that time we did this trial because I had so much pain from walking. I did not have foot drop at that time and my evertors for my feet did work. So, I just kept walking.

                    However, now that you have raised this idea, I may just go back there again. I had a Total Knee Replacement in 2013. Warning to other MS peeps: be careful where you go, there be dragons there. I think for early MS patient and those who are strong and going to the gym, etc., a TKR is perhaps a good idea. It has been a disaster for me, since the day it was done. Because I was so far along in MS, I was unable to wage the physical fight required to get the TKR to a healthy place.

                    Anyhow, one of the many things the PT is tackling is the dysfunction in my thigh caused by troubles with the sephanenous (sp?) nerve along with loss of function of the peroneal nerves in both legs. The difficulty with the sephanenous nerve was caused by the knee replacement----my body laid down layer after layer after layer of scar tissue following surgery. Autoimmune response? Who knows. I did have two scopes done of the knee itself, to remove scar tissue on the knee. As for the layers of scar tissue going up my thigh, there's nothing for that aside from a Physical Therapist's wicked thumbs and toys.

                    We know the scar tissue is affecting the sephanenous nerve. But perhaps all of that scar tissue is causing spasticity and a Baclofen trial is worthwhile at this point. Either way, I think a trial at a high dose would be worthwhile either way. I do take small doses of it for PT and other times when I can feel the spasms (20 mg). It sorta relieves the spasms, and makes me pee my pants every time. So, it is pretty good at relaxing a neurogenic bladder. LOL. And it's good for inducing a nap when you just need the escape of sleep.

                    It's all so complicated. I cannot keep my ankles bent at a 90 degree angle, I cannot keep my foot straight, and I cannot wear AFO's to correct this because of the problems with the TKR and AFO together. 5 minutes of walking in the AFO's and I am in screaming pain, even though everything feels lined up better than ever.

                    I'll be seeing my neuro (at Partners MS Center in Boston) at the end of March, and I'll make sure spasticity is on my list of topics.

                    Thanks for thinking for me. It's a really confusing place when you get to this point in MS. There's just so many things that do not work right, it is hard to know which problem is THE critical one. My arms are very weak, but I don't walk on those, so I do lifting of 5 lb weights each day. My bladder has a mind of it's own and I have ways to deal with that. My swallowing is poor, so our menu is based on that. My cognitive skills are poor, so I do only one thing at a time, and I do not drive, although "they" have told me it'd be OK. And then Nothing from my waist down is right. Is there anything there that can be targeted, like spasticity? Who knows!!!!! That's the problem. I might contact the neuro and get permission to once again titrate up on the Baclofen to see what happens. I did this before, I can do it again. I will let you know!

                    Blessings.

                    Comment


                      #11
                      Waiting for My Chair

                      Hello HereIam,

                      I am so sorry that you are in such pain. Living with high levels of pain is almost impossible. If your physical therapist and your doctor think a wheelchair would help reduce your pain, please go for it. Living with pain is neither fair to you nor for those close to you.

                      I’ve posted about both regarding my struggles with the idea of a wheelchair (giving up!!) and the slow process of obtaining a power wheelchair (PWC) through the Medicare process. I require a PWC because my left side is so weak that I go in circles with a manual wheelchair. In addition a manual wheelchair is simply too exhausting.

                      Right now, I’m told to expect the delivery of my PWC no earlier than April and no later than July of this year. I made the original appointment for a Mobility & Wheelchair Seating Evaluation in October 2016. So, pack your patience!

                      I began to consider a PWC for two reasons. The first is safety. I’ve had four uncontrolled falls in the past year. Amazingly, none of those falls resulted in injuries (other than to my pride when I fell in public). All the falls occurred as I used my walker.
                      The second is exhaustion. Even though I can still move around the house with my walker, it is exhausting to do so. I’ve found myself staying in my bedroom in front of the computer more and more.

                      What finally made me decide to start the process of getting a PWC was renting a Pride Jazzy Select Elite power chair while on vacation. I suddenly realized what an MS World member meant when he wrote, “I was handicapped until the day I received my power wheelchair!” Gone was the fear of falling. I no longer constantly looked for something to grab in case I started to fall. I could effortlessly move around the condo and go outside for walk with my wife. I was no longer exhausted just by moving around the condo. It was wonderful.

                      I am so looking forward to the delivery of my PWC! The down side is expense. We’re remodeling our bathroom, widening three doors and having a ramp built to get in and out of the house. That ain’t cheap.

                      Transporting the thing is still an unsolved problem. It'll weigh around 400 lbs. New drive-in wheelchair vans with ramps go for around $50,000! So, we haven’t figured that out yet.

                      I hope this information is helpful. I hope you find a solution for your pain and some ways to get even more enjoyment out of life.

                      Best regards,
                      Jim
                      Jim DX RRMS Dec-2005, PPMS Jul-2007

                      Comment


                        #12
                        Oral baclofen is the pits at high doses.

                        Moving to a baclofen pump you stop taking milligrams and start taking micrograms with better results and dramatically fewer side effects.

                        It's not unheard of to take 1/5000th of your previous oral dose when moving to a pump.

                        The baclofen pump trial takes 1 day. They give you an epidural with baclofen and monitor you for a number of hours to check your results. It's amazing.

                        We have a number of msworld members with pumps. There are some big facebook groups dedicated to baclofen pumps.

                        Comment


                          #13
                          Thank you all for checking in and sticking with me on this. I believe this thread will help a lot of people when they search for answers to the type of question I have posed.

                          Jim T---I am so sorry your wait for a wheelchair is so very long!!!! That is really frustrating, and you don't need the thing in July, you need it NOW. And I'm sorry you have had so many falls. Those are so very scary. And, I think for a guy who is falling down from a greater height than me (5 feet short) and falling with greater velocity due to a higher weight than me, it must be really terrifying, like TIMBER!! I've had many falls, and have had broken bones as a result of a few. And, they were all my fault, as I keep on pushing against a rope. I suspect I will always have that problem. It's a life long tendency in my case.

                          Marco--Well, before I even think a moment further of a wheelchair, I will have a baclofen trial pump. So, if you go into the trial with your ankles and thighs screaming from that days activities, and they send some med through the pump, you feel relief immediately and that's how they can tell for sure that it's spasticity? Wow if that's the case.

                          In the meantime, I am going to a pain management clinic next week. I wonder if a baclofen pump is in their arsenal. I should hope so!

                          And, I'll just keep pushing against that rope. Today I've done my activities of daily living and 2 hours of sewing. It's 2:30 and there will be little else in this day aside from loving my 5 critters, knitting, reading, napping, and asking my dear husband what's for dinner. That I am in a warm house in New England with all of these blessings within my four walls..... well, I am darn lucky in spite of it all.

                          Comment


                            #14
                            Originally posted by HereIam View Post
                            Marco--Well, before I even think a moment further of a wheelchair, I will have a baclofen trial pump. So, if you go into the trial with your ankles and thighs screaming from that days activities, and they send some med through the pump, you feel relief immediately and that's how they can tell for sure that it's spasticity? Wow if that's the case.
                            It depends on the dose that you need versus what you are given. Some people need a lot less medicine and end up like a noodle. Other people need a lot more than the standard dose and get limited, if any, relief.

                            Here's more information about the process --> http://www.baclofenpump.com/consider...test/index.htm

                            Comment


                              #15
                              indulge

                              Hi Herelam, I'm sorry things are so difficult for you at the moment. I just wanted to comment that I bought a Zinger wheelchair last year and I love it. I'm 69 and I walk using 2 poles outside and 'wall surf' inside. Sometimes I'm much better and staggering is at a minimum but on other occasions I just sit. I bought the chair so I could have a choice. It is light and it will fit in the car, although I haven't done that yet. It is just wonderful in the house. I can scoot about packing away the washing and setting up the meal. It fits through our doors, although I have to manouver it down the small steps at the front. There are disadvantages as it has no tray so carrying things is a problem but we'll figure something out. Don't leave it too long. Life is too short. Use whatever device it takes to help you enjoy it.

                              Comment

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