How I Stop Feeling Overwhelmed by ALS

Dagmar Munn avatar

by Dagmar Munn |

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new normal

living well

It doesn’t matter if you are a patient living with ALS, or the person who provides care, ALS can feel overwhelming. Too many changes, too many decisions, and our own energy ups and downs can make us want to throw in the towel and holler, “I give up!”

One way I bring balance back into my life, especially now that I live with ALS, is to pay attention to my daily life routine.

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How does ALS overwhelm us?

ALS brings unwanted changes to our bodies. Moving, eating, talking more slowly, and feeling fatigued are all common symptoms for people living with ALS.

We face mounting decisions about our healthcare and worry about the future. We dwell on the things we can’t do anymore and put ourselves in what I call the “ALS waiting room.”

Medical appointments and home-care needs disrupt our day while the fun things we used to do get pushed aside. Normal isn’t normal anymore.

Loathingly, we call it our “new normal.” But wait, I believe we can turn our new normal into a good normal.

Revise and declutter

For me, it boils down to decluttering my entire day. In the first year following my diagnosis, I found myself trying to keep up with my pre-ALS life while accommodating the things that had changed because of ALS.

Just like cleaning out a closet, I examined my daily activities and chose what to keep and what to get rid of. I looked for time-wasters, energy-wasters, and things that were no longer important to me. For example:

  • Swimming at the local pool was my favorite pre-ALS activity. But with ALS, it took me longer to get ready to go, and once in the water, my movements weren’t as effective. Now I exercise at home, dividing it up by doing several short bouts throughout the day.
  • My hands soon grew tired from using a hand-held toothbrush three times a day. Now, I use an electric toothbrush. It is easier to hold and does a better job, too.
  • Once I began using a rollator, I realized how essential it was to my health and safety. I now own three. One is designated for indoor use only, another sits on the back porch, and the third is stowed in our van for on-the-go use. The entire setup makes for seamless travel from one end of the house to the other — my own “pony express of rollators.”
  • My husband (who is also my caregiver) and I take time to compare our calendars. We talk through my social and medical appointments, pre-planning what I’ll need to get ready or bring with me.

Accept and work with change

Even though I follow a daily life routine, holidays, visitors, or travel can throw me for a loop. Or my ALS is the cause. Either way, I don’t see it as failure; it’s a signal that I have a new, new normal, and it’s time to revise and reevaluate my day.

Every journey with ALS will be unique. However, we can share ideas and learn from others. One great resource is the new ALS News Today Forums. It’s a space designed to give our readers an easier way to connect with each other, share comments, and ask questions related to ALS. It is open to all in the ALS community — patients, caregivers, family, and friends.

Together we can learn to live well while living with ALS. 

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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 Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

Dr Zamzam Elmarsafi avatar

Dr Zamzam Elmarsafi

I really enjoyed too much with this article , I also optimistic and accept what God gives us . Though I have bulbar ALS which is the most aggressive type still try to enjoy and feel peace .

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Sharon Sinanan avatar

Sharon Sinanan

Oh my, thank you for sharing. I didn't know bulbar ALS was the fastest type. My husband had that but he was so brave and strong about it... Now I know. Keep your head up and be strong.

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Ma. Teresa Jacinto Santos avatar

Ma. Teresa Jacinto Santos

Im from the Philippines. I was recently (May 16, 2019) diagnosed with bulbar ALS though my symptoms started in April 2018. Unfortunely, the medicine riluzole is not available here in the Philippines. I'm still trying to procure via on-line in other countries. Please, share with me your experiences via my email at [email protected] God is good, everyday I'm claiming His healing power through Jesus Christ. Thank you.

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Dagmar Munn avatar

Dagmar Munn

I suggest you contact ALS Worldwide: https://alsworldwide.org/ They are an international organization who can Skype with you and provide information, resources or funding for ALS patients.

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JANET BRISKY avatar

JANET BRISKY

I have had ALS for two years now do you think any of these mice trials and whatnot is actually going to be in time to help me of this thing depression is known in ALS patients please

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Dagmar Munn avatar

Dagmar Munn

Janet, I recently attended an ALS conference with national speakers discussing the state of clinical trials for ALS treatments. Many proposed ALS drugs are moving from mouse to human trials. Many clinical trials are enrolling patients now. Check here if this would be of interest to you: NEALS Search for a Trial.
Yes, having ALS affects our attitude towards life - - hopefully you can read more of my past writings for this Living Well with ALS column. I try to show how I combat the negative feelings brought on by ALS.

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Julie Vander Meulen avatar

Julie Vander Meulen

Dealing with change can be difficult for people without any or minimal body/mind difficulties. I admire your continued efforts to find ways to cope in a manner that provides as much satisfaction with your life and keeps you in as healthy a place as you can be. You are blessed to have a supportive network, as many people do not. Wonder if, at some point, you could address those who live alone, or have little of no family support.

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Dagmar Munn avatar

Dagmar Munn

Thank you for your kind words Julie :)

As for your question - - I do not support isolation for anyone; especially those with ALS. I think it is the responsibility of friends, neighbors, acquaintances to notice if someone is living alone (in isolation) and reach out to provide contact. If the family is distant or can't provide support, maybe care can be arranged through an agency. You are right.... this is a good topic for a future column. :)

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Clare Crawley avatar

Clare Crawley

Thanks Dagmar - you are right about the relatively constant need to adapt to circumstances - your revising your day is a bit like what I do now - having learnt its necessary - some days I take I will just give in to this today approach - not a give up but a give in for a breather - it helps .

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Susan Freeman avatar

Susan Freeman

Dagmar, Although my husband has had symptoms for over 2 years now,he was just diagnosed. We have been struggling with his fatigue, inability to walk , breathing issues and more. This article and other like this is helpful in dealing with our daily losses. We want to enjoy the rest of our life together, giving up sailing has been hard. My husband has always been busy active, hard working and strong. It is difficult for him to be in this situation.Thank you for all your suggestions.

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Dagmar Munn avatar

Dagmar Munn

Thank you Susan. I send you and your husband strength and confidence. You can enjoy life together - - be aware and present in every moment - - beginning right now. You both may find strength in this piece I wrote: The ALS Game Board of Life

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Sherri reinlie avatar

Sherri reinlie

So much $ is going for research. I no longer believe the reasurches are doing enough. There is a cure for ALS. BUT REASURCHESES WILL NOT ADMIT. THE $ will stop coming.cannot stop grieving. MOM

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ZAMZAM ELMARSAFI avatar

ZAMZAM ELMARSAFI

AGREE TOTALLY AGREE

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Sheila Lowrie avatar

Sheila Lowrie

Sadly, I too feel that money plays a huge part in finding a cure for many potentially terminal illnesses. That is, if there are not enough people with the disease to make it profitable for the Pharma companies, it gets put on the back burner or isn't a priority. This is one of the reasons awareness of ALS is so important, it need to get off the back burner and into the front!

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Mae avatar

Mae

I really believe that there is a cure, but if they give the medication to cure it, then they won’t make any money because nobody won’t be sick.

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Mae avatar

Mae

It’s sad I’ve been diagnosed with ALS , I’m only 42. I have 3 children and my baby has Type 1 diabetes. It’s really hard to know that some day I will leave my children behind and my husband.

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Dagmar Munn avatar

Dagmar Munn

Mae - - your situation is heartbreaking and will be a challenge. Perhaps this will be of help: https://alsnewstoday.com/2019/05/28/new-kind-als-diagnosis-approach/

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mary SIECK avatar

mary SIECK

My husband is 9 months into his diagnosis with ALS. What a life changing diagnosis for both of us. I have gone from wife to caregiver in the blink of an eye. I agree that there is not enough attention paid to the symptons and trying to control them. Our diagnosis was given to us in our Neuromuscular Dr's office and felt like once they gave you your death sentence they sent you on your way. Please start offering some hope and encouragement to these victims of this terrible disease. My husband is getting home infusions (given by me ) of RADICAVA 10 days out of the month, he also takes generic Riluzole 2 times a day. However, we may never know what if anything these drugs are doing for him. Education is so important for the patient and the caregivers. Help all of us affected by the disease see some light at the end of the tunnel, even it is just a glimmer. Thank you for listening.

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Dagmar Munn avatar

Dagmar Munn

Mary, I am sorry that your husband has been diagnosed with ALS and that you are both beginning your journey living with this condition. Yes, there are those in the medical world and our communities who do not offer the emotional and physical support that is needed.

I invite you to join us at the ALS News Today Forums - - where ALS patients and caregivers are sharing information, tips, supporting each other and building a community of positivity and hope. Just click the link and click "join." I look forward to chatting with you both!

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Kathryn avatar

Kathryn

It's all about money. They find a cure, they don't get paid. Why don't they find a cure for cancer, ALS, etc.
It's about money.

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Dagmar Munn avatar

Dagmar Munn

Kathryn - - It's easy to feel frustrated and angry about ALS. And it's easy to believe in the conspiracy theories: us vs. "them."

But I believe that the human body is proving to be quite a challenge for the medical experts. I believe they will be successful.

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Carla Adams avatar

Carla Adams

Thanks to everyone for your comments. My husband was first diagnosed with FTD dementia, and then ALS. We've been dealing with this for almost 2 years now. Dementia causes the most issues at this point, but I can see he is physically getting weaker. We were both very busy active people and it has been very difficult to give up activities, going to events, etc. But I can see when he is getting tired, overwhelmed. So we adjust and adapt.

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calvin chan avatar

calvin chan

My wife is a young 69 and was diagnosed 12 months ago with FTD due to faulty gene C9ORF72. She now cannot walk, talk or dress herself. Also she is incontinent. Being of Finnish background apparently people from Finland are prominent in the occurence of FTD. It is so depressing to see her decline so rapidly. I wish some researchers would discover an effective treatment soon so that current sufferers can benefit from it.

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Dagmar Munn avatar

Dagmar Munn

I am so sorry to read that your wife has FTD. My heart goes out to you both. Yes, we are all hoping for a treatment and cure - - soon!

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Nancy Arcara avatar

Nancy Arcara

My husband died of bulbar ALS Jan. 27, 2014. He tripped in May
of 2011 and ended up with a paralyzed diaphragm. He chose a feeding tube March 2013 at Tampa General. He was 5 days short of 77 when he died. Since his death I have read many books on death and dying. My favorite book is Proof of Heaven, by Eben Alexander III M.D. NOW I am reading The Healing Self by Deepak Chopra, M.D. and Rudolph Tanzi, Ph.D. On page 111, Under Mindful or Mindless, a case of Norman Cousins, editor of the Saturday Review, and later an influential author of Mind-Body Healing. His discovery that laughter has healing power. In 1964 he was diagnosed w/ALS and he checked himself out of the hospital and started taking extremely high doses of Vit C and exposed himself to a continuous stream of humorous film and laughing matters. In 2 and one half years he was back to work at the Saturday Review. His story baffled the scientific community and in spired a number of research projects. I wish I would have known this when Joe was sick. I feel that this was a miracle. This beats depression. Joe lived for the NFL PACKER season and died 5 days before the Super bowl. He watched no news and sports all day. He was amazing!! I still love and miss him always.

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