Realize that you are losing the ability to do things you used to do. Work with your caregiver, family, friends, co-workers to reduce the physical effort you have to expend, and to help do things you no longer can do. Save your energy for the things that are most important to you. Below our some things we have done.
- Moved from a home with a yard to a town home, where the association takes care of the yard, home exterior, plowing, sealing, etc. If you can't make such a move, perhaps you can hire someone (or get family or friends) to take care of these things at your home.
- Moved from a home with second-floor bedrooms to a home with a first-floor master suite. I now live on a single level - no stairs.
- Put in a wheelchair ramp from garage floor to entry hall. You could install a lift instead. Ramp is cheaper and is very low maintenance, but takes up more space. We did this long before I started using a wheelchair, since it also helps when walking with a walker, or even just to avoid steps.
- Replaced stall shower with larger roll-in shower with grab bars.
- Widened some doorways and our entry hallway to accommodate a wheelchair.
- Removed the cabinets under my bathroom sink. This allows me to sit on my walker (or wheelchair), roll up to the counter/sink, and do grooming there.
- AFOs (Ankle Foot Orthotics). These prevent foot-drop, and provide significant support for weak ankles and feet/toes. Prescribed by PT, covered by insurance. https://www.kineticresearch.com/product/the-noodle-afo/
- Rollator walker. I used this to get around home (legs too weak to walk un-aided), and used it as a seat in various places. (It's seat is higher than most chairs, which became important as I lost the ability to get up out of low chairs.) Got first one through local ALS loan closet. Got second one (better fit) through insurance (was prescribed by PT). https://www.medline.com/product/Deluxe-Rollators/Rollators/Z05-PF04834
- Power lift recliner. For quite a while, this was my main place to sit in the home. Needed the lift capability because I couldn't get up without it. Got ours through the local ALS loan closet. https://www.goldentech.com/lift-chairs/
- Fat, rubber-grip utensils. Help when eating. https://www.amazon.com/gp/product/B01K098D90
- Bed rail. Before I switched to a hospital bed, this helped me get into bed, shift position in bed, get up out of bed. Got ours through the local ALS loan closet. https://www.amazon.com/Drive-Medical-Adjustable-Height-Assist/dp/B005JIJRZ2
- Toilet seat riser. Raised toilet seat four inches. This, along with a set of portable hand rails, allowed me to get up from toilet. Our PT gave us this. https://www.amazon.com/Essential-Medical-Supply-Toilet-Standard/dp/B002WC91N6?th=1
- Rolling shower chair. I transferred from walker outside shower to shower chair inside shower, and back. Shower chair has casters, so I could move around somewhat in the shower (with help of shower grab bars). https://www.amazon.com/gp/product/B002VWK0O6
- Sit-to-stand lift. When I could no longer get up out of low seats (shower chair and toilet, especially), we got a lift that helped me transfer between seats - where the sling just goes behind my back and under my arms, so can be put on and taken off while I'm seated. Patient must have some arm and leg strength. Insurance covered this: http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?prodID=GHS350
- Hoyer lift. Useful when patient has little or no arm and leg strength. We also used this to get me off the floor to my wheelchair when I had fallen. But hard to maneuver, especially on carpet. Also, takes some effort to get sling on and off. We got one from our local ALSA loan closet: http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0&prodID=RPL450-1&catOID=-536885359
- Overhead lift - portable. Alternative to Hoyer, but can only be used in a fixed location. We use one to transfer between bed and wheelchair, or between bed and commode. Portable (sort of). Got ours from local "Hearts for ALS" loan closet:
- Power wheel chair. As I lost ability to walk more than a few dozen yards with walker, this became my mode of getting around outside the home (and it's now also used inside the home). Came with a Roho seat cushion which really helps when sitting for longer periods. Got first through the ALS loan closet: https://permobilus.com/product/f5/ , then one fitted to me through insurance: http://www.sunrisemedical.com/power-wheelchairs/quickie/mid-wheel-drive/qm-7-series
- Wheelchair van. Allows me to take the power wheelchair wherever the van can go. Even used ones are not cheap. Consider a fund-raiser, or a GoFundMe page (we raised over $19k this way). For more info, see the Wheelchair Vans page.
- Amazon Echo/Alexa. Use your voice to do many things. We're still learning how to best take advantage of this technology. https://www.amazon.com/Amazon-Echo-And-Alexa-Devices/b/ref=amb_link_4?ie=UTF8&node=9818047011 Some things we use it for:
- Ask questions, similar to Apple's Siri, and Google's "Okay Google".
- Listen to music. Comes with a basic Amazon music service, but we use Spotify instead. I can say something like "Alexa, play the album 'American Garage" by Pat Metheny Group", or "Alexa, play some dinner jazz music".
- Control our TV, DVD player, VCR by voice.
- Control lights by voice.
- Answer the front door, lock/unlock the front door
For more info, see the My Smart Home page.
- Take time to rest. Build it into your schedule. Be sure to get enough sleep.
- Within reason/ability, keep moving. Stretch and do range-of-motion exercises to maintain flexibility and as much strength as you can.
- Don't waste energy on little things that others can do for you (others are probably more than happy to do them for you).
- Get a handicap parking tag (or license plate); use handicap parking.
Recreation for the disabled in New York State
- Access Pass: https://parks.ny.gov/admission/access-pass/ Application and information for NYS access pass which permits residents of New York State with disabilities, as defined in the application, free or discounted use of state parks, historic sites, and recreational facilities operated by the New York State Office of Parks, Recreation and Historic Preservation and the New York State Department of Environmental Conservation.
- Accessible Recreation Destinations: http://www.dec.ny.gov/outdoor/34038.html
- Motorized Access Program for People with Disabilities (MAPPWD): http://www.dec.ny.gov/outdoor/2574.html The MAPPWD permit is a temporary revocable permit (TRP) that provides motor vehicle access to certain state lands administered by DEC. Permit holders can use a permitted vehicle to travel beyond the reach of public roads, to areas where others must hike or bike. The permit provides access for those who seek solitude, connection to nature, undisturbed wildlife habitat, and inclusion with fellow sportspeople.
- Wheelchair Accessible Trails near Rochester, NY: https://www.traillink.com/cityactivity/rochester-ny-wheelchair-accessible-trails/