Overwhelmed with fear

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SanDiegoSue

Active member
Joined
Mar 14, 2017
Messages
40
Reason
PALS
Diagnosis
03/2017
Country
US
State
Ca
City
San Diego
Just diagnosed and I'm terrified. I'm sad that this disease will kill me, but I'm scared about losing control...needing to have someone feed me, clean me after the toilet, etc. Are there any articles or books that any of you can recommend to help me understand the stages of decline and how to give up control?
 
Hi Sue
First big hugs and welcome to the forum.
I remember feeling all of those things when I first found out. Give yourself a little time to process, the first few weeks will be a bit of a rollercoaster of emotions. There is lots of information on the forum and we will all answer questions and try to help you.

With the fears about help with feeding cleaning etc, I felt exactly the same way as I have always been a very reserved person. All I can say is you get used to it and adapt, counselling was of great assistance. I try to keep control over as much of things as I can which helps. This means I have the remote for the hoist not my husband ;)

It doesn't all happen at once, and we all have a different progression route. It does depend a bit on your onset type. I am limb onset so can still eat drink and talk almost normally still. Some people with bulbar onset retain the ability to walk for a long while. We don't all get the worst case everything all at once.

Sorry you have to be here.

Wendy
 
Hello Sue, I am so sorry to meet you here, none of us should be here but we are. First thing you want to do is slow down and take control of your emotions and your actions. Like many things it is never as bad as it seems right now. As my ALS specialist said to me, you may have decades left, don't worry yet you have years to do that and what can you do anyway, nothing, so try and be calm and carry on with life in your normal way. and be happy. You can not change things. We are all here to help each other so don't be afraid to ask for help here or just to rant, that is ok too.
Al
 
Many hugs, I was just diagnosed this month as well. I don't have a lot of advice because it is all new to me, but I have much empathy to share. As to books, I did look on amazon during the diagnosis process and didn't see much. I tried one short book but it didn't tell me anything I didn't already know. I have found the internet to be a better resource for information so far. Everyone here is really kind and helpful and willing to answer questions.
 
It is so scary, there is no getting around that. It is not good for you to look too far ahead right now. I read a couple books that help me tremendously and the first months.

Before I say goodbye: my year of the living with joy by Susan Wendell
After reading this book I was able to begin my own new year of creating memories with the people in my life I love the most. And I had a fantastic time going on trips with my children, extended family and closest friends. What a treasure those memories are now

How to be sick
It has a lot of Buddhist inspired techniques for chronically ill people. And actually it was uplifting for me , As strange as that may seem. It taught me techniques for making the most of my situation, instead of wasting time sitting around feeling sorry for myself.

Otherwise, making friends on this forum, been able to interact with others who know exactly how we are feeling has been tremendous help, comfort, and a source of and valuable information.

You are not alone in this journey, we are here to help.
 
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Hi Sue, welcome to the club no one should have to belong to. As said the first little while can be a bit of a roller coaster. Bear in mind that while ALS will have its way physically, you are still the person you were before all this happened. All sorts of difficult days are coming, but it's not all happening today. Live fully in the day, it's all anyone has.

As far as books go, Amyotrophic Lateral Sclerosis by Hiroshi Mitsumoto has been my go to book. I got the ebook on kobo. Your local ALS Association should have information and resources to help you.

All in all this forum has been a great source of info and help. You're no different than who you were in February, be where you are and look for grace. It can be hard to find sometimes, but it is always there. I have ALS, ALS does not have me.
Vincent
 
Thank you everyone. I'm going to look for those books.
Sue
 
Welcome, Sue. Your fear was my husband's greatest. You don't have to give up control, as much as the realities of the disease will shift care for many of your physical needs to others. Work with people (family, friends, professionals) who understand and support your need to keep control over the parts that really matter, shed anyone who doesn't, and you will still be you. Best, Laurie
 
Laurie, in what ways was your husband able to keep control?
Thank you,
Sue
 
We all understand that initial fear. We are here for you we are here for each other I love it
 
Hi Sue

welcome

The book ” Everyday life with ALS : a practical guide” produced by the Muscular Dystrophy Association (md.org) is an excellent primer for understanding and managing ALS although it is a bit dated. It is a free publication that can be downloaded from the web.
(https://www.mda.org/sites/all/themes/mda_bootstrap_subtheme/pdf/Everyday_Life_with_ALS_P-532.pdf) .

In addition to the books already mentioned in previous posts I would recommend typing ALS into Amazon’s search box for the latest ALS books, some of which offer comprehensive management recommendations as well as in-depth explanations of ALS symptoms and the disease process along with a lot of easily accessible web-based references.

I found that the best treatment for my anxiety and fear began with learning everything I could about ALS so that I could anticipate and prepare to manage symptoms as well possible as they advanced. It turned out that reading widely and researching specific ALS related issues on the web were my best medicine.

Best wishes

Eliot
 
I can greatly understand your fear but with ALS each case is different. My dad had limb onset and he would get hoarse at times but he never lost his voice except for the last 24 hours of his life. My dad used a bi-pap for about a month a night when he was first diagnosed but ironicially in his particular case his breathing actually improved and he never needed it again which was rare. My dad was able to eat anything too as long as he at small bites and paid attention to what he was doing. We never talked to him much during meals so he could concentrate on his eating so he didn't choke. My dad was a very active man before his diagnosis but he learned to adapt to slowing losing the use of his limbs. He still had a good quality of life even with his physical limitations. He liked to go to the movies, out to eat, just sit outside in the sunshine, and to attend sports events of his grandchildren. It took adjusting naturally but he got used to his new normal. Please don't hold it in and talk to your loved ones about your fears or vent on here. You will get tons of good advice and develop friendships on here from people who truly understand firsthand what you are going through. Please feel free to post any questions you have because the PALS and CALS on here or more then willing to be of support in anyway they can. Hugs.
 
Sue, since everyone progresses differently, it's hard or impossible to predict what you will be able to control (physically) as you progress. Having caregivers who understand and respect your needs will be invaluable. You may not be able to execute you plans, but you can communicate your desires to others who should follow them. My husband used to be a real fix it guy. He built and fixed and worked around our property all the time. Now he hires people and tells them what to do. That is one way of retaining control. He makes financial decisions and executes them over the computer. As his hands get weaker, I become his hands, but his brain calls the shots as much as it ever did.

Yes, you will lose control over your body, so be sure that you are surrounded by people who respect your needs and desires.

I wish that I had more. I wish that I could take away the reason for your fear. I'm so sorry you are facing this.

Becky
 
Hi Sue,

My biggest worry has always been losing control of my body. It helps a lot to meet the people here and hear their stories. Also, when I went to my first support meeting with a friend, we both cried all through it because I had no physical limitations and saw what my future might look like. Once I got to know the other PALS (some already lost the use of everything but their voice) I was deeply touched and surprised by the happy things they said and did. Even the ones who could hardly talk or not talk were encouraging. Each adapted as they needed.

Each story is different but know there are people here who go out of their way to give you support.

I try every day to not let ALS steal my joy.
 
Welcome, Sue. First, I am very sorry to have to type those words. But welcome nonetheless.

In my opinion, control is a bit of an illusion, even for those who are not afflicted with a debilitating disease. What do we really have control over? We really can't control other people or, in many cases, the situation we find ourselves in. What we can control is how we accept and adapt to those situations.

I have chosen to live every day to the fullest, using adaptive technology of any and all types to get the most out of life.

While I can still walk a bit, I have been using a wheelchair for over 2 years. I can no longer ski on regular skis, but I ski with an adaptive biski. I bought new kitchen knives that fit my hands and allow me to continue to slice and dice as my hands get weaker. I can no longer sharpen those knives using a japanese waterstone (as I have done for over 30 years), but keep them incredibly sharp with an electric knife sharpener (which I vowed for decades I would never use).

I am very careful about limiting my activity so that I can preserve the functionality I have for as long as possible.

Yet, with all those actions, I accept that someday I will lose my ability to do things. That acceptance has allowed me to get great joy out of every day, even the rough days.

As for books, I have found great solace in the bible, particularly the book of Job.

Steve
 
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