There are many different kinds of accessories and equipment that can help both the care-giver and the affected person cope with many of the difficulties IBMPFD presents.
One wants to delay both onset (mostly through nutrition and exercise) and the degradation rate (through use of nutrition, exercise, and specialty equipment). The following lists some types of equipment and available locations to obtain. Some financial assistance may be available from Medicare or MDA, although one must consider one's situation in each case where financial assistance is desired.
Obtaining funding assistance for many accessories is available; however, there is often a lot of paperwork involved. The article from MDA Quest magazine "The Best Offense is a GOOD DEFENSE" provides some tips and suggestions to facilitate the process.
There are several on-line distributors that offer a wide variety of equipment from various manufacturers. Some that we have used or know of include: Planet Mobility (http://www.planetmobility.com/); Spin Life (http://www.spinlife.com/); Active Forever (http://www.activeforever.com/); Medicaleshop (http://www.medicaleshop.com/); Allegro Medical (http://www.AllegroMedical.com); Ocelco (www.Ocelco.com), which also links for wheelchair (mostly manual) repair parts (www.wheelchairparts.com).
The following specific items are ones that I or a relative have used. The web site for the manufacturer is listed, noting that one should use the manufacturer's web site to obtain specific information or assistance in in determining the optimal model and selecting additional features, but purchasing will often have to be from a distributor (on-line or local). More recommendations are needed.
1. Grab bars to be mounted in many locations, e.g., showers, near steps or ramps, to assist with balance. From Home Depot or Lowe's, although specialty bars can be built for unique applications, e.g., near therapy pools, by http://www.elcoma.com/. Ramps are quite useful to get over thresholds and come in a variety of sizes, e.g., made of extruded aluminum, or one can have larger ones built to bypass stairs, see http://www.handiramp.com/wheel-chair-ramp.htm or http://www.ezaccess.com/ramps/ramps.html.
2. Lift chairs, both recliners and for dining from Golden (http://www.goldentech.com/index.php) or Pride Mobility (http://www.pridemobility.com/). Portable lift seats, such as from http://upeasy.com/ are very useful.
3. Scooters from Pride Mobility (http://www.pridemobility.com/), Pacesaver (http://www.pacesaver.com/), or others are extremely useful for going places. A scooter lift from Bruno (http://www.bruno.com/) for use to carry in a vehicle is essential. Get the one that has a remote to rotate, extend, and lower the scooter electrically. I also use an electric utility cart, in this case one customized from an old Club Car golf cart (a standard golf cart is too small for use by a normal size person, e.g., 5'8" feet or taller) for use around our property to carry things or go to the Post Office. Bruno also makes a chair lift to place on stairs, when one can no longer go up and down the stairs. In the past, I used a powered wheelchair from Pacesaver (http://www.pacesaver.com/) with an elevating seat (to help stand when I could) and had used a manual wheelchair from Sunrise Medical (http://www.sunrisemedical.com/index.jsp), another source is Drive Medical (https://drivemedical.com/catalog/index.php).
a. A standing powered wheelchair, such as from http://www.redmanpowerchair.com/ or http://www.permobil.com/ or a standing device, such as from http://www.easystand.com/ can be very helpful. RESNA (Rehabilitation Engineering and Assistive Technology Society of North America http://resna.org/) provides information for clinicians, caregivers, and patients on the benefits of standing. Review the paper on applications for more information. I have a Redman standing wheelchair that is helping to reduce my blood pressure, i.e., by occasional standing. The Redman is very helpful in raising me up to access various items or to lay down to take a nap.
b. Power wheelchair accessories or upgrades are helpful. For wheelchair headrest and mounting hardware, consider https://www.symmetric-designs.com/savant-head-positioning, https://www.symmetric-designs.com/headrest-mounting-hardware, and https://www.symmetric-designs.com/axion-rotary-interface. For wheelchair backs consider https://www.symmetric-designs.com/free-form-seating. https://permobilus.com/products/seating-and-positioning-by-roho/ provides a variety of wheelchair options. For wheelchair cushion options consider https://aquilacorp.com/our-story/ (the website also contains published studies and articles).
4. Canes and walkers help with balance and support when walking. Pick-up tools help to get things off the floor or when otherwise difficult to reach. A long shoe horn helps with putting on sandals (easier to put on and fewer problems with toes curling than shoes) and a clothes pick may help with dressing. A rolling cane or rolling walker is a lot easier to use on non-carpeted floors, e.g., laminate, vinyl, wood, see www.FullLifeProducts.com for ideas and for availability.
5. We use a therapy pool (http://www.myendlesspool.com/index.asp) for both exercise therapy and a good place to relax. The pool is heated to ~ 100 °F using strictly solar heating. The warm temperature is easier to use with the hydro-jets as well as more comfortable to enter and stretch in, especially when one cannot be extremely active anyway. A pool lift will be required when one can no longer use the stairs, see Aquatic Access (http://www.aquaticaccess.com/).
6. A commode seat lift is available, which can be electrically powered. Especially when using a transfer lift or a transfer board, make sure the lift will be at the correct height and angle to use the other equipment. Some do not fit easily over handicap toilets (now called comfort height), but one can relatively easily make some improvements for functionality. Portable commodes (http://www.nuprodx.com/), that fit over toilets, are also useful, especially when traveling. For sanitary purposes, an add-on bidet is extremely helpful. Not only is this a relatively private way to deal with a major sanitary issue for the mobility impaired, the system also helps with hemorrhoids, a frequent consequence of sitting a lot. If used in conjunction with a commode seat lift, one should contact the bidet manufacturer for verification that clearances will be adequate and, in some cases, for additional components. I use the BB-1000 from BioBidet (http://www.gobidet.com/), which installed easily on our Cariana commode lift (no longer available) and works very well. I recommend the bidet with a remote control, as using the controls on the bidet can be awkward for the impaired, also the controls on the bidet can interfere with use on a commode lift. Another type is the Swash 700 or 800 from Brondell (http://www.brondell.com/index.php).
7. A LiftVest (see www.liftvest.com) can helps move the disabled person, while being easier and safer for the care giver.
8. Parts, tools, and accessories for wheelchairs and scooters can be found at www.edmond-wheelchair.com. For example, the tire levers are useful tools for changing parts such as tubes or tires, the packs and saddle bags are helpful accessories to put on wheelchairs or scooters to carry things. A large number of accessories can be added to scooters or wheel chairs to increase storage or add functionality, see http://www.diestco.com/.
9. A Hoyer lift is useful for getting off the floor, see http://www.sunrisemedical.com/index.jsp for ideas. A standing transfer lift, such as the ArjoHuntLeigh Sara 3000 (http://www.arjohuntleigh.com/usah/) is very useful for transferring from a sitting position to a sitting position in a different piece of equipment, e.g., from a bed to a wheelchair, from a transfer chair to a lift chair. My wife has found the Sara 3000 to be a major improvement when transferring me to/from the wheelchair to other locations. We also use when traveling, as the transfer lift is easier to use than a transfer board.
10. Rolling shower chairs are useful for showering and also can be used as portable commode chairs. We use transfer chairs provided by nuprodx inc. (www.nuprodx.com); these are made of titanium, so are very light and are not ferro-magnetic, so can be used near MRI machines. Some other examples include: http://www.invacare.com/cgibin/imhqprd/inv_catalog/prod_cat_detail.jsps=0&prodID=6891&catOID=null; http://www.clarkehealthcare.com/chairproducts/ocean_vip.html; http://www.sammonspreston.com/Supply/Product.asp?Leaf_Id=567041. These chairs have different features, whose usefulness will vary with need.
11. Compression socks can relieve some of the pain and swelling associated with loss of mobility from the atrophying of the lower leg muscles. See http://www.footsmart.com/Product.aspx?ProductId=351&cm_re=xsell-_-product-_-1 for an example of a sock that has worked for me for short periods of time. For edema, i.e., swelling of the feet, ankles, or legs from prolonged sitting, can be alleviated with exercise, e.g., standing. In some cases, pneumatic compression devices may help, note cost and functionality vary widely. See the paper on edema (also in the references section).
12. While many people have cell phones (I do not), there are other forms of communication. For land lines, a voice activated phone can be very helpful; see http://www.ablephone.com/ for several examples. In addition, a walkie-talkie is often useful; see http://www.motorola.com/walkie-talkie/english/index.html for a variety of examples. See http://www.walkietalkies.com/ for general information and other suppliers.
13. A transfer board is very useful for transferring to/from a wheelchair (manual or powered) and other equipment, e.g., beds, car seats. While simple boards are not very expensive, a better method is the Beasy Easy Transfer System (http://beasyboards.com/). This system should be used with a transfer belt (http://www.allegromedical.com/patient-care-c530/safety-sure-transfer-belt-p557229.html) for proper support and ease of use (both affected person and caregiver). The Beasy is available in various sizes and shapes, e.g., for fixed vs. movable wheelchair arms, different transfer distances.
14. Robotic arms or powered arm support can help one do a variety of activities, e.g., eat, open doors. For the Jaco robotic arm visit http://partnersinmed.com/jaco-robotic-arm/,
for the powered arm support visit http://www.armonproducts.com/products/ayura/.
As my degeneration increases, I will find and use additional equipment. Anybody that has additional suggestions now, please provide e-mail me your suggestions.
The following link is to an article that I wrote for Quest Magazine, an abbreviated version was published in Quest Extra (July-August 2007): Living In an ADA World . The article contains information about equipment that is useful in the house or when traveling.