You have ALS. Now what?

Before I get into this post I want to update you on the last few weeks, since we talked last. Let's see...Friday nights with Steve is still working out. Last night was fun, we have now gotten the "prep for bed" routine down to an hour and /or the length of Adele's 14 track CD blasting.(good thing my mom is deaf)  . Our neighbors dog woke us with incessant barking and to help me get back to sleep Steve curled up beside me and held me tight. Awwwww. It worked!
Movie recommendations:
Around the  Bend  and Never Again.Both were done through Netflix streaming.
Thank you for the comments to the February post "What a difference a year makes".  It was the first time my kids had heard me talk so candidly, especially my son, Chris.  It was rather upsetting and difficult for him to read. As I mentioned before, we didn't get into the mortality details with him in the beginning because of his age. Well he is now 16 and he knows we need to "talk ". The door has been opened and we will talk when he is ready.

This Post will be more of a practical guide for after you have been diagnosed with ALS. This is more nuts and bolts and some of the information has been posted before. If you have ALS or you know of a PALS (People with ALS).and have questions, please ask in the comments section or    email me at hgoodswak@verizon.net. 

You will be in shock and you will be angry. You have just learned that you have an incurable disease that will piece by piece take your body away from you, eventually leaving you paralyzed and mute. It affects everyone you know. On the bright side, it does not affect your brain, you retain body sensation and feeling, there is no pain, except pain from overcompensating, and your eyes still work. You still can make a difference in the world and you gain a new appreciation for life.

I recommend first you get some sort of faith, I cannot imagine going through this without some belief in a higher power. You might say, how could a higher power, who supposedly loves me, let something so devastating happen to me and my loved ones? That's where trust in your faith comes in, knowing there is a reason for everything and even though you don't know why, believe that it will be good.

Now you must set the self-pity aside and start focusing on what you need to do to be prepared for the upcoming changes. Slap a smile on your face and remember the things to be thankful for. Everyone has "stuff" in their lives, many have it tougher than you.

Enough preaching.

It is recommended that you get new equipment at least 3 months before you need it. I was mind boggled by that concept , thankfully Steve was able to recognize the "big" picture and kept me on task. Listen to your body for clues about what body part might be affected next. For example, my clue was cramping and slight spasming in an unaffected area. This would happen 3 months before it would degenerate. This was very helpful. Have a circle of friends and / or family near you that can keep your spirits up and help you keep things in perspective and positive. This is called the Inner Circle.(see 10/23/11 posts for more details)


BED:
Steve researched beds for a couple months. The   most important long term piece of equipment. Key points: -0- pressure points, Ergonomic support, reduced body temperature, efficient blood circulation. The massage / vibration feature is imperative to have. Not only  does it keep your blood circulation going but if you're on a respirator it keeps your lungs from getting gummed up.  Nothing like Magic Fingers!!
The pads on the bed are key to not getting bed sores, they must be breathable.  We replace the pad annually, approx.$100.  Do not buy a standard hospital bed, they don't have the right padding.  When I was in the hospital a couple of years ago they gave me a bed that rotates your body. Steve looked into them and not only were they 3 times the price but they didn't meet  any  of the necessary points. The market may have improved since we were buying but make sure it meets the other key points. We bought the SAT Bed.(Self Adjusting Technlogy). httP:\\www.satbed.com .
This bed has been worth ever penny. It meets our criteria and then some.  The  base has 2 air-filled canisters, topped with a zippered section with the pad and closes with a layer of sheepskin. On top of that is a mattress with the ability to customize from soft to firm and everything in between.  Oh, and it works with your existing bed frame so your room doesn't look like a hospital.
A bed rail might be handy in the beginning for assisting you with getting in and out. This should be bought separatly from a medical supply store or an ALS closet (see10/23/11 post)

Walking:
As soon as you notice your gait changing , start living in sneakers or something sturdy and flat, not heavy. Buy a walking stick (see 10/13/11).  If you need a walker, get it on loan from an ALS or MDA closet. You can also get loaners from Senior Centers. I don't recommend buying one as you will only need it for a few months.

Wheelchairs:
When it comes time for a wheelchair, the ALS and MDA organizations are a great resource for vendors. We had very good luck with Craigslist for an interim chair. When you start planning your long term chair you need to think about the future. It is very difficult to envision where you will be physically in a year or even 6 months. Questions are asked that you have no way of knowing the answers. How do you want to power your chair when your arms don't work anymore? I was given 2 options. Sip & Puff or a head control unit. I went with the head control unit as my head and neck were still strong. I had difficulty picturing    using  the Sip & Puff if you had a weakened respiratory system or if you were able to talk. Too much stuff in my face. The head console worked very well. Make sure you add the attendant feature. This enables others to operate the chair from behind. The cushion must breathe and they have some great materials for that. I got The Storm with head control and computer console. The computer console is the size of an I-Pod and attached to the arm of the chair. I used it to change my speed and switch to reverse. It was also used fodiagnostics and trouble-shooting.
The process of choosing , training and perfecting your chair can be long. It's worth it. I recommend going with a vendor who will come to your home for training, fittings and adjustments. They should also have a location, within a reasonabe distance, that you can go to for any tweeking.
This is your most expensive piece of equipment and Insurance and Medicare will foot the bill. So, make sure the chair fits right and use the sales group as much as possible to get it perfect.

Eating:
There are special silverware and plates that simplify feeding yourself. Assortments will be found at your medical supply store. Simmons is a good supplier and you can see their full aray on the internet. Although I tried to feed myself as long as possible, to watch me was difficult, it was a lot of energy. My husband Steve would cut up my food and feed me along with himself. This was very humbling but I appreciated so much.

Safety and  Dignity:
As your body progresses through the disease ,privacy tends to wane. Let's jump into  some personal issues.
The OT at UCLA recommended a few changes be made to the bathroom. First order of business was to change our shower and tub configuration. They were separate units to start with. The shower had a glass door with a threshold. Eventually it was too dangerous for me to step in. We went to the home of a PAL that had recently done some retrofitting. We heard about him through the MDA. The plan for the shower came from him. We pulled out the shower and tub and built a walk/roll-in shower.  It's beautiful with a rippled glass partition for privacy.
Then came the shower chair. We had used a sliding bench for a while but that only works when you have upper body strength. The best piece of advise was, make sure it can tilt. Not recline, but tilt. The same goes for the wheelchair. Tilt is your friend. If your back muscles are weak when you recline, your head and body p osition will be out of whack when you sit up. A shower chair that can double as a potty chair, has wheels and can tilt is a little more expensive but is worth every penny for the safety and comfort. Insurance and Medicare will help.
Next is the potty. You will want a taller one. We chose Gerber. Put hand bars on the wall so you can pull yourself off and on independently. I used a walker without wheels for balance. Our OT advised we add a bidet system. We chose Toto. It is an enormous dignity factor.
Preserving what dignity you still have takes on a new meaning as the ALS progresses. It's not really about pride, it's about normalcy  and trying to hang of to your sense of self as long as you can.

Well, that's a lot of information and I hope it helps. I will post more on communication in another post. Also look for the pros and cons of getting a respirator. If you have any questions please send me a comment or email.
Thanks for reading.