Newly paralyzed? There are a lot of questions you have and a lot of things you don't know to ask about. We've all been there. Let me share what I've learned since being paralyzed in 1998.
COMMON QUESTIONS:
- Where can I find a reliable caregiver?
- Where can I get catheter supplies?
- What is the possibility for a recovery?
- I've heard about getting a UTI. What is it and how can I avoid it?
- What are my choices when it comes to a wheelchair?
ANSWERS:
- The best resource to finding a caregiver are others who have a caregiver that is leaving them or know of one that is looking for a client. Here are two web resources: http://www.homecareexchange.org/for-ihss-recipients and http://www.homecareexchange.org/a-step-by-step-guide/
- Your best bet to finding catheter supplies is to check with your insurance company for a list of approved distributors.
- Everyone's injury is unique. There are quads who can walk, some people have a complete injury meaning they can't feel or move anything below the level of their injury, others like me are incomplete. I can feel my legs a little and I can wiggle two of my toes. The best thing you can do is explore your bodies abilities on a regular basis. Exercise is a good way to stimulate your body.
- A UTI is a Urinary Tract Infection. A UTI is contracted when urine gets bacteria in it that colonizes. Several ways to prevent them are to A) Stay hydrated.and B) Empty your bladder regularly using a clean technique if you self-cath. If you use a leg bag, make sure to change the catheter that is either in or attached to your body. A couple of additional things that I do are: Take cranberry pills and D-Mannose powder.
- The first thing you need to do is find a Durable Medical Equipment (DME) company. Again, your insurance company would be a good place to start. Also check with your peers. Once you've located a DME company, talk with them to narrow your choices. The main categories of wheelchairs are POWER or MANUAL. There are a LOT of variables in each category. To familiarize yourself with them, either subscribe to New Mobility Magazine (life beyond wheels) or go online and Google wheelchairs. However if you do this you've got your homework cut out as you'll get about 17,000,000 results! That's where a DME company comes in.
COMMON SUGGESTIONS:
- I would start standing as soon as possible. There are numerous standing frames on the market.
- Make sure you do a pressure release at least once an hour for a minute. Sitting for hours on end puts tremendous pressure on the skin underneath your sits bones.
- Get a good cushion. As in 5 above, your DME company can help you decide which cushion would work best for you. The possibilities include air, gel or foam. There are also combinations. I use a Jay Easy foam shell with a Jay 3 gel insert. For many years I used a ROHO air cushion and then an Invacare air insert around a foam shell.
- Ditto for the back.
- Develop a bowel program as soon as possible. You're not used to not knowing when you have to go or maybe you're unable to go normally and find you need either an enema or digital stimulation (this is what I do), but the key is to find a convenient time to go every day or every other day so you don't have accidents. It took me a couple of years. I go in the morning before I take a shower. Some people do this before they go to sleep.
- You will also want a good mattress. There are many really good pressure relieving mattresses on the market, the most popular ones being the Tempur-Pedic and the Sleep Number. Most people cannot simply move around at night, so either turn themselves or have someone turn them a few times. I have a Tempur-Pedic mattress and find that I can stay on one side or my back for three to four hours before turning.
- Get in touch with Triumph Foundation http://www.triumph-foundation.org/ to learn about additional resources.