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

Status
Not open for further replies.
Still not seeing replies to posts unless I make a new post
 
Tillie,
I'll PM you my e-mail address. Might make things easier.
 
Kim, your letter is great. Thanks so much for doing this.

Sharon
 
Kim, I'm playing catchup with this thread today, and I'm so sorry that I'm so late. This is wonderful. The comments you've already included are very powerful, and this letter that is growing as it develops is a fabulous contribution. Now I have to start thinking about my list. So far, the PALS have said a mouthful.

Becky
 
Some thoughts from a CALS...

When you visit our home, please understand that things are organized for my PALS' convenience. The furniture is placed to accomodate his chair, dishes and his favorite treats are placed where he can reach them, and that big Tervis Tumbler that is always sitting on the counter by the fridge is for him (in the event that I'm not readily available to pour a drink for him). We use a smaller pitcher than we used to for his tea because he can't pick up the larger one when it's full. Please don't block his access or relocate things without checking with me first.

It takes a minimum of two hours to get my PALS fed, medicated, showered and dressed in the morning, and then I need time to clean up after him and get myself ready. Please understand that early appointments are very difficult for us, and if you are visiting we won't be up and going very early. If we've welcomed you into our home, please make yourself at home and plan to entertain yourself for much of your visit while we take care of things you probably don't want to hear about.

My PALS cannot stand and I cannot lift him, so we try to schedule our outings around his bowel movements. If we misjudge, he's stuck wearing a dirty diaper, and that is no way to socialize. We try to be on time when we've made plans with you, but sometimes we're going to be late no matter how hard we try.

We often cannot predict when my PALS will need to sleep all day. If you've planned a visit, we appreciate it, but please don't be offended if your visit is with me. Unfortunately, I won't be free to leave with you because he does not sleep unattended. I monitor him so that can respond if he gets tangled in the sheets or his arm falls off the bed while he sleeps (the weight of his arm hanging down while he sleeps can cause pain for several days). I also adjust the bipap mask, refill his drink, empty his urinals and respond to a variety of other issues while he sleeps. On top of that, I'd no sooner leave him alone, stuck in bed and unable to rise, than I would leave an infant home alone in a crib.

Please don't ask me what I'm up to besides ALS these days. If I had time for anything else, I'd be talking about it.
 
Love to Kim, it's Sunday here so I will sit with a cuppa at some point and have a lookie. Warning, it could develop an aussie accent if I touch it .... :lol:
Thanks for the edit, Tillie.
 
Soon, I'll be starting on the CALS part. Big thanks to Tillie for all suggestions and editing as we go along. There are still more comments pouring in from other PALS. After we get a good share of comments from more CALS, I'll start work on some "personal stories." If anyone (PALS or CALS) would like to write or use something he/she has already written for an up close and personal, please <link removed by Moderator>e-mail me.
 
Last edited by a moderator:
I have contributed to this thread earlier and have read every post. Great info and feedback from everyone! I just want to interject one little thought though ........ Many people have stated (if not in this particular thread, then elsewhere in the forum) that they fear abandonment/isolation, which is a very understandable fear. The diagnosis of ALS is enough of a kick in the A**; losing the contact of friends and family is another. This thread has been a great avenue to vent, and I do not doubt that when Kim gets done editing it and compiling it into a document that is user friendly for CALS / family / friends that it will be an AWESOME resource. But ...... (here it comes), please keep in mind if we are too critical or touchy or hurt by the WELL MEANING INTENTIONS and blunders from family/friends/acquaintances who are blindsided by the revelation that we or our PALS have ALS, we will reap exactly what we fear the most ....... isolation and "rejection". Please forgive if this offends anyone or it is too blunt. The love of my life / my PALS is sleeping soundly as I drink my 3rd glass of wine.
 
Still can't see the posts after my last post. Sorry. Also lost my thank you button.
Starting to compile additions from other PALS on Facebook and local group along with beginning CALS. Keep posting.
 
I have contributed to this thread earlier and have read every post. Great info and feedback from everyone! I just want to interject one little thought though ........ Many people have stated (if not in this particular thread, then elsewhere in the forum) that they fear abandonment/isolation, which is a very understandable fear. The diagnosis of ALS is enough of a kick in the A**; losing the contact of friends and family is another. This thread has been a great avenue to vent, and I do not doubt that when Kim gets done editing it and compiling it into a document that is user friendly for CALS / family / friends that it will be an AWESOME resource. But ...... (here it comes), please keep in mind if we are too critical or touchy or hurt by the WELL MEANING INTENTIONS and blunders from family/friends/acquaintances who are blindsided by the revelation that we or our PALS have ALS, we will reap exactly what we fear the most ....... isolation and "rejection". Please forgive if this offends anyone or it is too blunt. The love of my life / my PALS is sleeping soundly as I drink my 3rd glass of wine.

Thank you. One of the PALS statements that I just typed addresses abandonment. Your comment on well meaning intentions will be politely incorporated into it. I understand completely. I'm one of those who have been abandon by someone I least expected so I get it. And I didn't even have to say anything. In fact, I did just the opposite. I wore myself out trying to please, then tried to buy the love.

I'm glad you posted this! Thanks.
 
CALS tip

1. If you say you will do something - NEVER let these people down, you must be reliable, no matter how small the help task seemed to be.

2. Don't say - let me know if I can do anything to help. CALS will usually find their mind immediately empties and they look at you blankly. Do not confuse this with - oh well they don't need anything. CALS will rarely reach out and ask for help, they are too busy getting through each day.

3. Do say - What can I do to help this week/today or something specific. Offer some ideas of help you could give such as:
- may I come and mow your lawn regularly?
- I shop every week, can you email me a list and I will bring your groceries to you?
- I have xxx day free most weeks, may I visit and maybe you could go out for a couple of hours?
- Can I bring you a great coffee this afternoon?
- Can I set up an online roster of what you need help with and get people to join it?

The point is - offer something concrete, no matter how small, then stick to it.

4. Do not give glib advice such as - don't forget to take some time out for yourself, or gee you are looking tired you need to sleep more.
 
What a neat idea, Kim.
I was diagnosed in Nov 2015 and until recently, only told immediate family. I still work and though my co-workers seemed concerned I didn't know what to say other than 'still looking for a diagnosis of something' (I use a rollator now, so pretty obvious I have a problem).
I recently had lunch with an old friend who is connected to a huge network of other friends whom I haven't seen in years, though interact on FB, daily. I purposely told her, knowing the others would soon hear too. And sure enough, they now have. For this I am grateful as it is in the telling that is difficult.
The good news is the monkey is no longer on my back. The other good news is all of these dear friends are getting together to throw me a tribute party.

My point here is that now that the 'world' knows, there is an eerie silence. Very few have reached out to say "Hey, I heard the news, it sucks!". And now I will be facing 150+ people , all with pity in their eyes. That is not what I want. (and may have to remain sober, now that I am starting on Baclofen! Do you really have to abstain from alcohol on this drug?? Perhaps a topic for another post!)

So, if you can work in a way to add: 1.) no pity party; and 2.)silence is deadly, I would love to see it hit the list. I hope to crush the elephant in the room upon arrival!
Thanks for sharing and good luck wiht the list!
Margot
 
Margot, My thank you button disappeared. Thanks for the input.

Maybe you should to to the tribute party with a pen and paper so you can take names of those who offer help. Maybe the "party" can turn into a caring gathering of people willing to step up and offer assistance. Even if just a few do, it will be time well spent. Now that you're "out" let them know what you want and need. Let them know how you feel and what they can do to help.
 
Here is the document with more comments collected from PALS and CALS.

Our wonderful Tillie has volunteered to help me format and edit. She has already made a major contribution to this manuscript. It is far from finished so keep posting whatever comes to mind.
 

Attachments

  • ALS manuscript revised 3-21.pdf
    156.2 KB · Views: 226
Kim,

I used FB as well to notify most of my family and friends of my diagnosis as well. My immediate family and friends I notified in person so that I could take the time to explain motor neuron disease types and the courses that specific one would most likely take. I told them that I am not a doctor and that I was not an expert. This seemed to work well for the most part for me with one exception. There is always one in every group isn't there? In the beginning there were a few that acted as if I had the plague. They were uncomfortable being around me because they did not know what to say or how to act. I am an outgoing person and I just reached out to them and showed them that I had not changed except for the disease. I have suffered from very severe depression for the past four years as well. My MND started about this time as well. However I have had some of the very best mental health care providers in the country. At least I would rate them that high. Meds work for me a somewhat for the depression but the counseling has been tops. I have very, very good coping skills now. I still have my days though. Back to topic. As I said before I am very outgoing. With depression if something is bothering me I try to formulate a plan to work on it as soon as possible as not to stew on it. I use FB now to keep friends and family up to date on my progress. I let everyone know that if they were still uncomfortable it was ok and that I understood if they did not want the updates. I call my posts the ALS Times. I may be fortunate and never develop full blown ALS but it is what most associate with MND. I update and educate them as we go. I include humorous daily events or stories that I may doctor up just a little so that we never stay too serious. I now have quite the following. I have to admit it is very good for me as well as it helps to keep me positive. Here is a little example. I currently use a wheel chair now to get around. I can still walk some but my legs can quickly become weak with little or no warning which can result in a fall. As we know those can be dangerous for PALS. Showering is very difficult for me and would be dangerous if I showered alone. As I quickly get tire. I sit in a chair in the tub and my wife (who is the most beautiful woman in the world and my best friend) works the sprayer. Now for the first attempt at an assisted shower we quickly discovered that the directions in our vows, you know for better or worse, sickness and health, were very vague to say the least. We washed the legs and lower parts uneventfully and moved on to washing my hair. Everything was going great I said to myself, self, we should have got help sooner. That is when we moved on to my face. I told her that I was ready to wash my face. I guess that I did not need to breath at this point because I was being water boarded. after I was done coughing and recomposed I informed my lovely wife that the next time I was ready for the water I would give a signal. As I was still wet I lathered up, took a breath, and gave the signal. No water. I would have thought that the well had gone dry except for the uncontrollable laughter. As the laughter subsides I am out of air so I come up for a breath. Yep you guessed it, I was being water boarded again. We managed and got through that first shower and had some fun doing it. Boy that would have been a hot conversation topic on our first date. :shock: Now you can see why my peeps keep coming back. This works for me on FB. As for professionals my neurologist put a note in my file that I should continue to lose weight. I was just over 300 pounds when this all started and yes I agree that I needed to lose weight for health concerns. I did lose 60 pounds. I was not feeling better and was losing a great deal of muscle. My condition kept me from doing most physical activity so I stopped the diet fearing it was doing more harm than good. From what I have read in the forums from PALS and CALS this may be a good idea. I eat heathy anyway with lots of fruits and vegetables. I just feel its a good idea to maintain for the time being just in case the suspected diagnosis from my neurologist become reality. Not sure if this was just an oversight on her part or if she is more familiar with trauma than disease. I currently get my treatment from the VA. Outside second opinion coming forthwith. It does seem as though a great deal of the public and professionals alike need more information about ALS and MND, especially support staff. Expedite, expedite, I have to constantly tell people everywhere when trying to make appointments. I have to explain over and over that this is a progressive disease and if it is ALS it is terminal. I constantly have to tell folks that we live hourly and daily not weekly and monthly. What you guys are doing is great keep up the good work. Looking forward to see what else you may come up with.

Bryan
 
Status
Not open for further replies.
Back
Top