我的生活

My name is Ein-Shei Chang. I was diagnosed with ALS in I have lived for 14 years with this disease and though my life does have many frustrations, it has been happy and full. In these 14 years, I have seen my oldest son get married to give me a grandson. My daughter has finished a Master’s degree and is teaching in Japan. My youngest son has just started law school at the University of Michigan. And I have travelled to over 15 countries and happily boss my family around on a regular basis.

I have been asked here today to share with you how I spend my time as an ALS patient. In addition to my daily routines, I would like to share with you some things that have made my life easier over the past few years. If you have any questions, please feel free to ask them at the end of the presentation.

ALS patients are very special. We retain all of our mental faculties. As a result, it is very important to remember, that we are not JUST ALS patients. You cannot just take care of our physical well-being – our mental well- being is just as important. An ALS patient’s mind is NOT impaired. We think clearly. You must remember that in caring for us, you are not caring for a thing, but a human being.

I have frequently wondered why it is that some ALS patients, whose bodies are in far better condition than mine, choose to give up their lives. I believe that perhaps they feel there is nothing left to live for. They have a clear mind, trapped in a body they are unable to control. They struggle daily, trying to communicate with their caretakers, and the frustration is overwhelming. What was once easy, is now an entire day’s work. ALS is an emotionally exhausting condition.

Caretakers, in order to help your patient/loved one to combat depression, I urge you: 1) to preserve and protect the patient’s dignity. Cover their private parts in the shower, close the door when they are using the restroom. Even if it is only at home with family; and 2) to treat your patients as contributing members of society. We do not have to be a burden on society. We can still be active members of our family and social circles. But only if we have your support. Allow us time to refocus on a new purpose in life.

I have found that it is important to make sure you like your wheelchair. Add things to it that make it yours. It is the tool that will enable you to get to all the places you want to go to do the things you want to do.

 A headboard  A pad for my back  A seat cushion  A bag to hold things  A pillow to rest my head on  An umbrella to block out the sun

I spend most of my day sitting. So it is important to have a nicely padded seat. My daughter-in-law purchased this one at the store for about twenty US dollars. It is thick and soft and it keeps my bottom from getting too numb.

I find that a simple two-handled bag hangs nicely on the back of my chair. It allows me to carry things like water bottles and special eating utensils with me wherever I go.

My wheelchair came with a pillow. However, as my neck became progressively weaker, I found that it was necessary to create something that could help hold my head up. We sewed an empty tissue box to my pillow and put a tissue box cover on it. It also is good for storage!

Also, it is nice when I go out to walk around, to use an umbrella to block the sun from my face. But we’ve found that it is hard to hold an umbrella AND push my wheelchair. So, we added an umbrella to my wheelchair.

Notice that there are twisting screws that allow the umbrella to fold down when it is not in use.

ALS patients are very sensitive to changes in temperature. Appropriate room temperatures are critical for the comfort of the patient. The air conditioner in my room is a key piece of equipment, along with the space heater I use when I take a shower.

ALS patients are also subject to the pain of being unable to move to relieve the pressure on our bodies that results from gravity. What I have found to be one of the most amazing inventions of this past century is “memory foam.” I used to be uncomfortable whenever I would go to bed. When my husband bought me a memory foam mattress, I could finally sleep at night.

I also use memory foam as a pillow and as a buffer between my knees when I sleep. It makes a huge difference. I never travel without my memory foam.

I am also very lucky to have two wonderful caretakers who allow me to get through the many events I have scheduled in my day.

My Caretakers’ Schedule LilyMaricel Week OneCaretaking during the day Housework during the day and helps at night. Week TwoHousework during the day and helps at night. Caretaking during the day It is important to rotate the workload. Taking care of me is hard work. Making sure my caretakers can handle the work is very important.

Communication is the key to increasing the standards of living for an ALS patient.

I can also use a Chinese clear board or my computer to communicate with the people around me.

My Daily Schedule 05:30Wake up16:30Nap Exercise17:30Shower Work on the Computer & Wash up 18:30Eat Dinner 06:30Eat BreakfastExercise 20:30Watch TV with my Mom Work on the Computer22:00Return to my room 12:30Eat LunchWork on the Computer ExerciseWash up Work on the Computer23:00Go to bed As communication is difficult for all ALS patients, it is important to make sure we establish a consistent routine to enable our caretakers to help us the best they can.

As ALS patients, we spend a great deal of time sitting. Sitting too long makes my bottom hurt. So, after every meal, my caretakers will stand me up and pat down my bottom, legs and back to help my circulation.

I chat with my kids, and see my grandson in California.

I make sure I get all my food onto a plate first. Otherwise, everyone else will eat everything.

Standing is crucial to your long term health. It helps to strengthen bones and prevent serious injury in the case of a fall. Stand as much as you can.

General movement improves circulation and keeps energy levels up.

Just because we’re handicapped, does not mean we do not like to go out. I have a van that will allow my wheelchair to be loaded with very little effort

Since my neck is pretty weak, when I am in the car I use a head strap to keep my head from moving around too much when the car brakes or hits bumps in the road. It is a simple length of velcro that wraps around my headrest and my forehead.

We go… Shopping

To family events Or…

To eat with friends Or…

Sightseeing Or…

It doesn’t really matter what you do. It only matters that you do SOMETHING.

It’s back to home, dinner, my computer and Taiwanese Soap Operas with Mom.

我兩個月前在台灣自由時報，看到一則新聞。 英國 天空電視台，播放一位運動神經原疾病患者，英國 的美籍教授， 在瑞士尊嚴安樂死公司幫忙下，安詳 死亡的影片。 他說「他如果選擇活下去， 他就是選 擇痛苦。」 他還說「他怕癱瘓無法言語時， 沒有人 知道他在受折磨。 」他的想法非常真實 ，多數病友 都有此顧慮 。由此我們知道， ALS 病患的看護， 只照顧他的身體是不夠的， 心情維護也很重要。所 以想要真正提高居家照護的品質， 研發一套漸凍人 的語言是必要的，像聾啞人的手語， 盲人的點字， 能快速精準的與人溝通。 免除 ALS 病患，怕不被 瞭解的深層恐懼。

Any Questions?