Things you'd like to say to people, professionals, and relatives about ALS

[KimT]

As I posted a lengthy informative status on FB today is was mainly to inform distant friends and family of my diagnosis and let them know about ALSA. I was trying to be informative but couldn't help posting some of the things that hurt me along the way. Things like being called "the ALS" at a local doctor's office, friends telling me doctors make mistakes and "you'll beat this."

I try to be a productive person so as I was reading comments I recognized that I had an option of feeling bad or turning some of my disappointments into educational opportunities for others. I still have access to over 1,000 employees at the college via group e-mail. That will end on March 10.

I'd like the assistance from PALS, CALS, and others. Just reply to this post with statements that help, hurt, educate, and further understanding. I'll sort it out and compose a group post for the folks at the college (we've lost 3 faculty members to ALS). Keep in mind that most of the people reading have no clue, other than the Ice Bucket Challenge, how hard it is to deal with ALS, both as a PAL and CAL.....and also as close family members and friends.

Thank you all for helping me.

 

[Vincent]

I know what you mean. I still have friends who ask if I'm feeling any better. I tend to stick with the stats, this is a terminal disease, 2-5 years is the usual course this disease runs. There's no cure, the only treatment might give you an extra couple of months, other than that it's all bad news from here. It is kind of blunt, a definite buzz kill. That's the way the Dr told me. In Canada we're the poster child for doctor assisted death. Yeah. It sucks that much.
Vincent

 

[Herc]

I was diagnosed almost six years ago. I very rarely look at these forums because some people need attention. Honestly I was active duty military when I was diagnosed. I've had four complete neuro workups before being diagnosed and retired. My best advice is to take each day as it comes. My progression has been very slow and I attribute it to#1 not panicking, #2 don't kill yourself with the bucket list. If anything this is when you should take it easy. If you want a nap then take one. When your car starts to break down the last thing you do is floor the throttle and keep it there. Finally about the swallowing and speaking thing. My voice is still fairly strong and I can eat fairly well. Its important to keep the buildup from forming in the back of your mouth and throat. I have sips of root beer throughout the day and for me that helps the throat and helps with the gas. I actually get a kick out of how much of a burp you can get sometimes, like being a little kid again. I have ALS it doesn't have me.

 

[swalker]

You pose an interesting question. What would I like to say to others about this? Well, here goes.

1. Some of my doctors know more about this than I do. But, not many and virtually no one else. So, if you are a medical professional, consider that in this situation the patient living the disease might know as much or more about it than you do.

2. I am not likely to get better. That is a fact accepted by a few people I know but disregarded by the masses. Telling me I look better is certainly a friendly thing to do, but I also know that it is not the truth.

3. I have lost a lot of weight. I started out on the chunky side. Now I am described as thin. Quite a few of those around me comment on how great I look because of the weight loss. What they don't understand is how much effort I have put into keeping my weight up where it is.

4. Back when I was walking more, I often received comments about how slowly I walked. Yep. I walked slowly, but I still walked.

5. Even though I use a wheelchair, I can still walk short distances. This astounds most folks. When they see me sitting in the wheelchair they think I must be a complete quad. My disease is progressive, but I am still very capable.

6. My voice is weak, but that does not affect my intellect. I am still the same person inside, even though I have difficulty communicating it at times.

7. I don't need or desire unsolicited advice on how to cure this. I am not interested in the magic lotions and potions you have to offer. Discussing this with me just uses up energy I could be using to do something of value to me.

8. My capacity to do things is surprisingly limited. I have about 2 good hours on a good day. I want to get the most out of life during those times.

9. My life is not over. I have a lot left to experience in this world and a lot left to offer. I intend to get the most out of every day I have left. If something is hard to do today, I want to do it. Next week it may not be possible!

I am sure there is a lot more, but that will do for now

Thanks for asking.

Steve

 

[AP1981]

1. I have no intellectual impairment
2. Yes i am young. It is rare but happens.
3. Please do not say "i know how you feel, i had cancer". You have no idea.
4. The little cold or tummy bug you have may kill me. Stay. Away.

 

[Nikki J]

To expand on AP's first comment also I am not deaf - no need to shout. And to health care professionals ( or any one else) please speak to me, even if I can not talk. I may indicate I want my s.o. to answer but do not ignore me. ( based on experience with my sister)
Talk to me about normal things. Ask my opinion if you would have before. If there is something I can help with in some way and I offer let me.

 

[lmcdaniel54]

I was diagnosed almost six years ago. I very rarely look at these forums because some people need attention. Honestly I was active duty military when I was diagnosed. I've had four complete neuro workups before being diagnosed and retired. My best advice is to take each day as it comes. My progression has been very slow and I attribute it to#1 not panicking, #2 don't kill yourself with the bucket list. If anything this is when you should take it easy. If you want a nap then take one. When your car starts to break down the last thing you do is floor the throttle and keep it there. Finally about the swallowing and speaking thing. My voice is still fairly strong and I can eat fairly well. Its important to keep the buildup from forming in the back of your mouth and throat. I have sips of root beer throughout the day and for me that helps the throat and helps with the gas. I actually get a kick out of how much of a burp you can get sometimes, like being a little kid again. I have ALS it doesn't have me.

Is yours bulbar onset?

 

[KimT]

You pose an interesting question. What would I like to say to others about this? Well, here goes.

1. Some of my doctors know more about this than I do. But, not many and virtually no one else. So, if you are a medical professional, consider that in this situation the patient living the disease might know as much or more about it than you do.

2. I am not likely to get better. That is a fact accepted by a few people I know but disregarded by the masses. Telling me I look better is certainly a friendly thing to do, but I also know that it is not the truth.

3. I have lost a lot of weight. I started out on the chunky side. Now I am described as thin. Quite a few of those around me comment on how great I look because of the weight loss. What they don't understand is how much effort I have put into keeping my weight up where it is.

4. Back when I was walking more, I often received comments about how slowly I walked. Yep. I walked slowly, but I still walked.

5. Even though I use a wheelchair, I can still walk short distances. This astounds most folks. When they see me sitting in the wheelchair they think I must be a complete quad. My disease is progressive, but I am still very capable.

6. My voice is weak, but that does not affect my intellect. I am still the same person inside, even though I have difficulty communicating it at times.

7. I don't need or desire unsolicited advice on how to cure this. I am not interested in the magic lotions and potions you have to offer. Discussing this with me just uses up energy I could be using to do something of value to me.

8. My capacity to do things is surprisingly limited. I have about 2 good hours on a good day. I want to get the most out of life during those times.

9. My life is not over. I have a lot left to experience in this world and a lot left to offer. I intend to get the most out of every day I have left. If something is hard to do today, I want to do it. Next week it may not be possible!

I am sure there is a lot more, but that will do for now

Thanks for asking.

Steve

Steve, This response is exactly what I was looking for. I will never disclose the identity or location of anyone who posts these things but I would like to use them, with your permission, in a document I post and possibly send to the college, newspaper and congress.

 

[KimT]

1. I have no intellectual impairment
2. Yes i am young. It is rare but happens.
3. Please do not say "i know how you feel, i had cancer". You have no idea.
4. The little cold or tummy bug you have may kill me. Stay. Away.

God bless you for adding these statements.

 

[KimT]

To expand on AP's first comment also I am not deaf - no need to shout. And to health care professionals ( or any one else) please speak to me, even if I can not talk. I may indicate I want my s.o. to answer but do not ignore me. ( based on experience with my sister)
Talk to me about normal things. Ask my opinion if you would have before. If there is something I can help with in some way and I offer let me.

Thank you, Nikki. These are the things that are important.

 

[pittsburghgal]

Do not ignore my PALS and speak only to me when we are together. He has a trach but can speak. There is nothing wrong with his intellect.
Please don't say "God never gives you more than you can handle."

Sharon

 

[Buckhorn]

This is a great idea KimT! As a CAL, I would add:

1). If it is too uncomfortable for you to ask the PAL about ALS, then ask me.

2). Remember the PAL is (most often) the same person intellectually as they have always been. As Nikki said, talk to them about the same things that you always have....... sports, politics, the weather, travel, books, whatever the PAL and you have had in common over the years is STILL a bond between you.

3). If you are a CAL outside of the family (hospice nurse, visiting therapist, etc.) find out what interest the PAL has (see #2!) and talk to them about this. Even in the late stages of ALS, or any terminal disease, the patient will in most cases be able to hear you while you are providing care. Don't treat them like an inanimate object. Talk to them about the beautiful blue sky outside, or the large, fluffy snowflakes coming down, or how beautiful the pictures of their children, grand-children or cat are. There is always SOMETHING you can find to talk to the PAL about, irregardless of whether they can respond or whether you think they are cognizant or not.

4). If you find it too difficult to "talk" to the PAL or find that you run out of things to say in a few minutes, then bring a movie over to watch together, or watch a baseball game, Survivor, or whatever together and discuss the movie plot, or the pitchers delivery or whatever!
Play a game of cards if the PAL is able, or a computer game, or bring a bunch of loose flowers over and arrange it together or at least ask the PAL how they would like it, and "does that look good like this" ...... They still have an active mind - help them to exercise it!

5). I personally think that the best thing you can say to the PAL when you first find out is "I'm so sorry. I care about (love) you." And human contact. A hug or a hand on the shoulder for even a moment is a warm gesture. Never underestimate the power of human touch.

6). IF you offered to help when you first found out about the ALS diagnosis, please continue to ask as the disease progresses and make yourself available to the CAL to help out. We have all heard "If there's anything I can do, please let me know", many times. Please don't make this an empty gesture. I tell everyone who has asked this question, "We're fine right now, but the day will come when I will need your help".

Herc, I love ..... " I have ALS it doesn't have me."

Thanks for allowing me to add my two cents here. I am new to this as a CAL, but I do have many years of patient care experience & I try to use some of the strategies I suggest above. I am by nature an introvert, so just "chatting" does not come naturally to me. I also appreciate the fact that most people are shocked when they learn of my husbands diagnosis, so I overlook the blunders that some people make when I first tell them. People think they have to fill the silence somehow, and grasp for something meaningful to say.

 

[swalker]

KimT: Please feel free to use my statements. I would never (intentionally, at least) post something on a public forum I would not want to have shared.

If what I write will help in any small way, it would bring me great joy.

I think my first statement did not capture my intent, though. It is not so much that a patient might know more about the disease than a medical professional, but that patient probably knows more about how to live with the disease.

 

[KimT]

Keep these great statements coming......I'm going to wait until Wednesday to compile them.

 

[sleepy]

Things not to say: (my bolding)

Very sorry to hear the news about this MND.

Look, here is just an opinion, I feel like I need to share this with you, since such an occasion occurred...

In terms of diseases, I have been researching the nature of some of the illnesses, and there is almost always a cause for anything in this life. Cause-effect law of the Universe. We just not always able to see it, therefore cannot fix the diseases in time. Some of the weird ones are also harder to understand and lie with their roots deep in the personality, character, habits, way of life. Not sure how much you might be into the spiritual things, but there are ways to fix human’s body via the invisible (energy) part of it. The body consists of the spirit as well, and there is constant energy flow throughout the body. If you bring the mind and the spirit/soul to the harmonious state, the body will have to follow as well. It starts from the mind though.

Not promising anything or suggesting, just letting you know that when I had some difficulties, meditation did help out a bit. The technique is simply explained and also is quite powerful tool too. Applied individually, and the results are unpredictable, however there could be a success too. Same as no success. So the risk is up to a person undertaking it, please be warned. Can be a quick burn down, or can be a miracle too! 
See if you are interested, at least you could read about it and see if that is something you may want to try if you start running out of options. I have been to the camp myself a few times already and am still alive, and so it does work for other people.
The results are heavily dependant on the current lifestyle you have when you enter the camp, current health state and willpower. For example, I am pretty hard-core Straight Edge, very actively involved in sports and exercises. The technique did work for me and did change me to the better of what I was few years ago. So… ))

Look up * meditation centre in *. www.
Or you could go to any other location.

There might be other options other than meditation, for example, healing Buddhist monks and other spiritual healers. But those are needed to be looked up. And, from my own experience, you are in the end responsible for your own life anyway… Fortunately or unfortunately, that is the way this world operates…
All the best, and I hope you will be alright!
I do not believe in terminal diseases, but I know that some are just very hard to identify the root cause for.
----

I had many responses drafted in my head... I turned off the computer.