Living with ALS comes with a side of frequent frustration
When I want to help and can't, I'm often at the whim of my resulting emotions
Have you ever tried to assemble something or repair something only to finally give up and seek help? Such episodes were among my greatest frustrations before I was stricken with ALS. In retrospect, they feel like mere child’s play when compared with what I go through now.
As a result of how far along I am on the ALS continuum, I’m unable to scratch an itch, wipe my mouth, hug my wife and daughter, or get an insect off my face or any other part of my body.
It’s frustrating to have to wait for someone else to do those simple tasks, which most people take for granted. I guess it’s a positive that I’m not afraid of bugs. Most of the time, I just sit or lie in bed and wait for the itching to stop or the fly to leave. Very frustrating. But there’s more.
The lives of men and women are filled with routine and even mundane activities, some of which provide satisfaction, relaxation, and a sense of accomplishment. Doing yard work, vacuuming, taking out the trash, maintaining cars, doing laundry, and preparing meals are interchangeable no matter who does them — but they must be done.
The tasks may be tedious and boring, but they’re also frustrating for those of us with ALS who can’t do them. Moreover, the longer we need to get to them, the more frustrated we become. ALS can cause anxiety, guilt, inadequacy, and trepidation, which for me leads to a level of frustration that’s difficult to describe and accept because my wife has to do most everything now.
Dealing with my frustration
My frustration level is greatest when I’m not able to get involved with solving some of life’s problems for my family. For example, we’ve had two water leaks in the past month, and unfortunately, they’ve led to other repair problems. All I could do was watch my wife’s frustration as she made numerous calls and set up appointments to get the work done.
Additionally, my daughter has a major water problem that emanated from an adjacent property. It was the first time she’d experienced anything on that level. Talk about stress — this issue caused all three of us tremendous frustration.
ALS prevented me from making a two-hour drive to help her. All I could do was talk to her and recommend what she should do. For fathers like me, not being able to help your daughter, your only child, is the ultimate frustration.
Under normal circumstances, I would’ve been there with her to help resolve the problem. But ALS is far from normal. It prevented both my wife and me from going to her aid.
Some may say, “C’mon Jim, that’s not a huge issue. It happens to a lot of people.” Yes, it does, but these kinds of situations are relative from family to family. I just know that things would’ve been different if I weren’t severely debilitated by ALS.
I wrote a column titled “Finding My Way Through the Doorway Marked ‘Humility.’” Now it’s time for me to heed my advice from that piece: I should “find the victory in this.”
I called my brother, who has a wealth of knowledge on insurance issues and lives near my daughter. He stepped in and guided his niece through the morass of red tape and bureaucracy. And my daughter learned more than she ever wanted to know about water mitigation, drywall, flooring, and other related issues. I’m sure she also learned that sometimes life gets in the way of life. Victory!
The best outcome was the enhanced relationship that developed between the two of them. I rest a little easier now. While I’m still frustrated, I feel better than I did two days ago when I began writing this column.
Isn’t life interesting?
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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Kevin E
Good article James. Veteran diagnosed this February with symptoms going back to March 22. I was always the go to guy to fix stuff now I am very reliant on others. Learning to ask for help was a good thing. I agree with you about the VA. Never had many good things to say about them until I got sick. They are amazingly supportive to me. I thank God I have the VA hard to imagine going thru this on tricare.
Teresa Simmons
As the wife of my precious PALS husband - and having been in the path of Idalia this week in Florida - I’m sure my husband shares in your frustration. Only a year ago we could prepare for such a storm together… This year prep and all calls to roofer and electrician for repair are now made by me alone… It’s important to have my husband involved thru his Eye Gaze to ask any questions of the service providers - and it also creates “awareness” of what this disease looks like to anyone who visits our home.. With God to light our way - my husband and I have a partnership nothing can separate Happy your daughter has a wonderful Uncle to look over her with her father’s love. Still finding blessings…♥️🙏🏼
Connie
We hear what you are saying and are so sorry for what you are going through. . And we feel for the situation that so many are in. But it sounds like you have a positive attitude and help from loving family. My husband, is in a situation, well over 2 years ago, a neurologist said you have Bulbar Palsy. You will choke to death but you have another 10 years to go. He’s 74 now. Just a visual contact, no tests, other than the ones he had already done. MRI, and CT scans. Nothing wrong. Now, he is weak , with weight loss, no longer to speak much. Been on no meds, except Dopamine. New neurologist said to stop. Just did EMG. Have any of you done that nerve and muscle test! My husband did it 4 days ago. Dr. Does not think it is ALS? Then what is it? Spinal tap test-on order. Would like to hear from anyone with similar symptoms, and testing done. We are so frustrated, but thank you if you reply. Connie
Dan Fortin
I share your frustration Jim!
PALS 1996
Shane Spiegelman
James you are right on target. One of the biggest issues after getting over how other people felt about me having ALS, is my daily declining ability to help out around the house. A reminder to celebrate little victories as they come. Also a stoic reminder that we should not judge the situation. Shame has no place with people with our affliction. Thank you for your post.
William Turner
As always your words resígnate with even us able bodied men. Although I don’t have the physical limitations you may have I have mental ones from time to time and your wisdom has been very useful in getting me to see the light in the darkness.
Keep sharing your wisdom, and also have your wife get some Avon Skin so soft, it’s a great lotion, but also a great bug repellent😂
Brian Stanfield
James- Thanks for sharing your experience with this community.. I miss the sense of accomplishment that follows a job well done. Frustration has just become another fact of life that we must accept.