Coming to terms with your diagnosis

[Veronika Wuyts]

hello, my husband (61) got diagnosed with a MND, probably ALS but not sure yet because atypival symptoms; nevertheless, symptoms are the same: weakening of muscles and losing power in arms, hands and face (variation on ALS is FOSMN facial onset and sensory motor neurone disease). We got the “diagnosis” on april 23, mid corona in Belgium, but knew it might go in the ALS direction from march 3. It is only since end of July we can say we have left the land of only grief and despair.

what helped us?

1. a good therapist for him, needed 2 before finding the right one (after 3 sessions you should be able to tell if you are at the right address, started in May so very soon after the diagnosis.

2. undoubtedly the little book and blogs of Dagmar “power woman”, which you can find on her blog https://alsandwellness.blogspot.com/2015/07/new-book-align-lengthen-strengthen-your.html

3. some books the therapist advised him such as “a Guide to the good life” by  William Irvine and “Being Genuine” by Thomas D’Ansembourg. as his partner I read them too so we can discuss it and be on the same page in all ways. (skip chapter on the philiophie history 😉 with Irvine)

4. our love and partnership of 32 years

5. sharing it with other people that can be our “backstage” as he calls it. receiving their genuine support and love

6. sharing with our kids (26-28) as soon as we knew without making them our emotional caregivers. They are his children and have their grieve too. we all have our role in the system. Our Kids are not our parents.

7. accepting that this takes all space and time now: concentration and energy for other things is hardly possible. be mild for yourself.

8. staying actor instead of victim, don’t give away your own power and authority by doing only what the doctor says. find out how to make your life better even with the dagnosis. Dagmar’s blogs gave us great ideas on how to keep taking our life in our own hands and not just follow the pace of the doctor.

9. decide who will inform him/herself, be a go-between for your partner and the information sources, because reading on the disease means you can accept it already. my husband doens’t read on the disease. I do that for him and he listens :).

10. read ALS news today, a magnificent website, avoid the panic and misery sites. go for the “actor”-sites, not the “victim” complaining sites as my sister in law and neurologists calls them

that is what we have found for the moment as helping…

be strong there and hang in….

[Frank Benincasa]

I’m going through this right now. I have an appt with neuro next week, but feel I already know. Fatigue, swallowing,(food getting stuck and choked badly 2 weeks ago),hoarse or no voice, short breath, twitching, tightness and cramps which get worse every single day, joint pain, plantar fasciitis in both feet (probably from tight calf muscles), drooling and slight weight loss. I find myself leaning or falling forward when I walk with slight pain as well as tripping if I don’t pay attention.  I ate 1/2 box of Oreos last week just to maintain the 158 pounds I have. I also have cognitive impairment. I tried to do my bank statement last week. It took over an hour and I kept looking at the paper and saying to myself “what do I do next”.  I worked in accounting years ago where part of my duties was the monthly statement so usually I could do in my sleep. I accept my symptoms but I’m sure when a doctor confirms, it will take on a finality. I pray every day for a miracle- not that God will cure me but that passing will be somewhat peaceful and not too stressful on my family.

[David Crellin]

Hi Dagmar, on the day I was diagnosed I was shell- shocked. I spent my teenage years nursing my mum though ALS to her death aged 49 – I was 17. So I knew what I & my family had to face.

But when my wife & I came home we told the wider family as well as our two sons. Then BBC news came on the telly with a report on ALS. That shocked people- it featured two people, one of whom started with bulbar symptoms. The phone never stopped ringing that night.
<p style=”text-align: center;”>And I’ve never stopped telling people – I created a PowerPoint talk which I’ll post to Facebook once I sort out the technology.</p>

[Kathy stitz]

I was diagnosed with ALS a few months ago and have been having difficulty with coping with this diagnosis.   I have felt hopeless and have had suicidal thoughts.  There is no cure for this and it doesn’t seem like there will be a cure anytime soon.  Sometimes I have even tried to tell myself I really don’t have ALS. I struggle mentally as well as physically with having pain in my body.  Things that I used to take for granted are harder to do now, like eating, speaking, breathing, and walking. Some days are better for me than others in terms of accepting that I have this and trying to do the best I can with it. Any help from others about things that helped them to come to terms with this diagnosis would be greatly appreciated.

[Dagmar]

Hello Kathy – – May I offer you my heartfelt assurance that we, who live with ALS… have all felt the same as you. I felt that the rug had been pulled from under me and I know your feelings of struggling.

But, also do know that there is light ahead of you, and it is possible to live a quality life despite having ALS. It does take gumption, processing through your feelings, and perseverance with a good dose of help from others. You have found yourself among friends – – we can offer you support and advice.

There are a lot of good topics & discussion here in the forum… take a few minutes to look through the “Living with ALS” forum, also, ask us questions 🙂 Finally, I invite you to take a look at my personal blog: ALS and Wellness Blog – – it is full of motivation and helpful tips. Plus, the first chapter of my free book may be helpful. The book is about my 1st year with ALS: https://drive.google.com/file/d/0B_JwTpNMOI1DeGpaQXpnRExNY2s/view

Hugs to you across the miles 🙂 Dagmar

[Kathy stitz]

Hi Dagmar,

Thank you so much for your response.  I think it’s really nice that people with ALS as well as their caregivers can find support and friends here.  Thank you for being one of the moderators. I look forward to learning more and participating in the forums.

[Marianne Opilla]

Thank you Veronika for your outline. We can all take strategies from each other to deal with ALS.  Information and research is empowering, except when we cannot access it.  Family is our foundation in ways we never dreamed were possible. Friends also can be uplifting. Who ever expected we would be in this “ALS Club”?

[Carolyn Barry]

It’s less than a week, since I was diagnosed with ALS. I’ve had various symptoms for 5 months, and even after a lengthy hospitalization at 2 hospitals, as well as weeks in rehab, not one doctor had any clue as to what all of this was caused by. After a 3rd EMG by a neuro-muscular specialist at yet another hospital, I was told I had ALS. Maybe because I’m early on, as far as the some of the typical symptoms, I’m having this crazy thought that maybe it isn’t what they think. I wonder if anyone else has experienced that? While I am soon to begin my care with an entirely new neurologist, who heads an ALS team, I still have to fight off these feelings of denial, and not yet believing this is actually true. I know it sounds crazy, but I’m hoping others have felt like I do, at least initially, so I can hear how they coped. I do have significant muscle weakness all over, can’t walk more than a step or two without a walker, so I’m hoping I can soon see my situation as it really is. I know I sound like I am in total denial, but I can’t stop hoping they’ve got it wrong. I thought best to post it here, to find out if anyone else has reacted like I did, when first being given their ALS diagnosis. I’m so happy to have found this site, as I sure do need it!

[Kathy stitz]

Hi Carolyn,

I am sorry to hear you are experiencing so many difficulties.   It is quite shocking, upsetting, and overwhelming to get this diagnosis.  I was diagnosed with ALS a few months ago, in June 2020.  Since then, I have had a lot of difficulty with coping with this diagnosis.  Denial is a totally normal reaction.  Sometimes I have tried to tell myself I really don’t have ALS.  I have also experienced depression, anxiety, sadness, frustration, and irritability.  This forum is a place where you can find people who understand what you are going through and can provide encouragement, support and advice for the challenges you are facing.  Dagmar and Amanda are excellent moderators of the forum.  Please take time to read posts from the other participants.  There are many different topics relating to ALS that you can post comments about.  We all support each other and learn from each other.  Best wishes to you and please don’t hesitate to reach out for support when you need it.

[Frank Benincasa]

I did that early. Thought my fatigue was adrenal and thyroid related. I take thyroid meds. Also thought breathing issue was thyroid related or maybe a return of Asthma I had years ago. I thought maybe the food getting stuck was due to approaching 70 after all things happen when you get old. I had already looked up some symptoms and when I started drooling I knew there was no way to explain it away as I did with the other symptoms. I guess it’s all the way your mind works that determine how you’ll handle any emergency. Denial has never worked for me and I know it won’t work now.

[Carolyn Barry]

Thanks Kathy, for your thoughts. I really appreciate you sharing how it’s been for you. It’s so good to know I am not the only one who reacted the way I did, when I first was given this diagnosis. I can see already what a great comfort this forum is, and I just know it will be so good to read others’ posts. Certainly was a bright spot in my day, to find it!

[Kathy stitz]

Thanks Carolyn.  I appreciate your response.   It is so difficult to have this terminal condition that has no cure and to struggle with so many different feelings and emotions as a result.  I am praying for a cure for all of us but for now we have to just try to be positive and live our lives in the best way possible.  This isn’t easy and there will be many difficult times and we have to just do our best to cope with this awful, life-changing condition.

[Carolyn Barry]

Thanks Kathy ~  All you said makes so much sense, and I think all of us who have this diagnosis, can get our strength from each other.  I’ve always felt that sharing our burdens, and life struggles, is what can make the biggest difference.  I think what’s hard for me now is not knowing what will happen next, as far as symptoms.  I know that my life will continue to change, and not in the way I had thought, but with no cure, it’s going to happen.  Reading what everyone posts lessens my anxiety over the unknown and how I’ll handle what’s to come.  It’s so good to know we’re all in this together.

[Marianne Opilla]

I was diagnosed 1 year ago.  Yes I went through denial, as did my family.  I still think it is just a bad dream.  I try to be positive, which allows my body to heal, but have periods of sorrow, defeat, and crying.  I imagine it doesn’t matter how long since diagnosis, we will never get used to the bad news we have ALS.

There is so much more promising research hopefully available in 2021.. even compared to 1 year ago.  We must take care of our general heath and be strong so that we can benefit from new treatments that are in the near future.

[Mary Tiknis]

I was diagnosed in Aug 2020 I am still

going through all stages of Elisabeth  Kubler-

Ross 5 stages of grief

sometimes all in one day

denial, anger, bargaining, depression acceptance

I am so thankful for Dagmar and Amanda  blog It helps me feel not so alone

i have a very supportive family and friends however they do not know how we feel

It is good to be able to share with people who are going through the same experience

I have hope for a cure in the future I am going to participate in a trial

Mary Ann

[Frank Benincasa]

I know. I usually wake up at around 3 AM with those 3 letters my first thought. It’s good to have someone to talk to, even strangers on a forum.

[Carolyn Barry]

Mary Ann,

I agree with what you said, that even with loving and supportive families and friends, being able to share with those who are going through the same thing, truly means everything.  Being diagnosed in October, after 8 months of increasing symptoms, I still feel like this is beyond shocking, to be told I have it’s ALS.  One of the hardest things I’ve been finding is that people, out of concern, and knowing my diagnosis, are often asking me if I’m getting better.  I’ve also been told to just keep trying to do my best, and stay determined.  While I’d like to think I have control over this disease, I know I don’t, and with no cure, I won’t be getting better.  I am curious as to whether or not anyone else has encountered the same, with those who know little about ALS.  I’m hearing others post the importance of keeping my spirits up, which is what’s in my control, and certainly makes good sense.  It seems that others just assume, without asking me, that I’ll be back to my “usual”, like not needing my walker or AFO’s, in a matter of time.  I appreciate others’ concern, and checking in on how I’m doing, but I find it challenging to be having to explain what having this disease really means, and why my symptoms will increase and not simply go away.   Thanks to everyone, who has shared what it’s like for you.  You each play a part in helping me get through the tough moments especially.  I will most likely be participating in a drug trial too, getting details next week.

Carolyn

[Suzanne Akerman]

Hello all,

I had a period over the first two months thinking my ALS diagnosis MIGHT be wrong. Not like my sister’s symptoms at all.

I had four years of preparation with knowledge about ALS. My sister’s ALS began in April 2015, diagnosed in 2016, and she died three years ago in in November 2017.

We did not know it was a genetic, C9orf72, ALS. Seems we three kids all got it, our brother too. I was diagnosed in February 2020, after a year of misdiagnoses. My progression seems slow, although it has only been nine months since diagnosis.

I am lucky that this site and others exist. Most did not when my sister had ALS.

I am a Christian, my faith is strong, and due to a life event when I was young, I have no fear of the future.

My friends have reached out to me to offer help. Fatigue is my biggest downer. My family understands, and is helpful.

I am lucky. My husband and I have often said all of our lives, that we don’t know what tomorrow will bring. Live for today. Life is life. Nothing else like it.

Suzanne (AKA Zenna )

[Dagmar]

Maryanne, Carolynn and Suzanne – – you are so correct in focusing your mindsets towards a realistic acceptance of ALS, yet, maintaining a positive attitude.

Carolyn, your experience with friends not understanding how to react or what to do is common. I’ve had that too. I used to be somewhat irritated at their response, then realized they were only reacting with their “default experience.” Usually, people get sick – – then they get better. People go in for surgery, use a walker or crutches – – then get better. It’s totally different to know someone who gets sick, or has a life-long chronic condition – – and they don’t “get better.” Friends don’t know what to do.

I’ve had chicken soup delivered, recommendations for vitamins, sympathy cards, even someone talking very loud and slowly to me! So, I decided I needed to “teach” them by modeling through my behavior: a positive attitude, I’m still showing up & participating and, will let them know what I need. (This column I wrote may be helpful to you: https://alsnewstoday.com/columns/2017/09/12/als-patients-heres-how-to-help-your-friends-help-you/)

I”m sending good thoughts to each of you and all our forum members 🙂

[Kathy stitz]

In one of Carolyn’s posts, she said that people are often asking her if she is getting better and that providing an explanation to others about ALS and what it involves is difficult.   Recently a friend sent me a card in the mail and wrote that they are praying that I am getting better.  I feel confused about how to respond to this.  Am I supposed to tell them I’m not going to be getting better? Am I supposed to not respond to this at all? My experience has been that nobody has ever asked me what ALS is so I have not told them what it is. It puts people with ALS in a difficult position when we are already dealing with so much.  Like Carolyn said, I guess people just assume we are going to get better.  I appreciate other people thinking of me but it is a challenge to know what to do in this kind of situation.  Maybe it just comes down to what each person feels comfortable sharing with others who know little about this condition.

 

[Dagmar]

Kathy – – I’ve learned not to stress out about the “technicalities” of what people are saying. Praying for me to get better, means to me, they are thinking of me… which is comforting. I don’t get into whether or not their prayer “will work” or if they think I’ll “get better.” In a way, getting better can also mean: accepting my illness, finding a way to live well with ALS – – it can be a mental improvement, rather than focusing on the physical.

I usually smile, say thank you, and add – – everything helps! (and thank them again). And leave it at that.

[Duane]

The card is merely a good-will gesture, I think.  Why read so much into it?  It doesn’t require a response.

[Kathy stitz]

Thanks Dagmar.  You have so much insight about ALS and I’m sure you have helped a lot of people who are struggling and it means a lot for the participants on these forums to be able to get support from others and also to be able to help others when they can.  This is an awful diagnosis to get but like you have said, if you are spending all of your time just feeling sorry for yourself then that is detrimental to your mental health.

[Kels]

Hi I haven’t been diagnosed either but have seen the neurologist twice. I have extreme anxiety and depression and feel so alone  as my partner and family think that just stress is causing my symptoms. I’ve had CFS for many years so have had benign fasciculations however I have also got myoclonus jerks. For about 4 years I’ve had esophageal spasms which are very painful and the jaw jerks started earlier this year. In June I started getting hot palms, then I had a hip replacement early August. Next I developed hot. sore soles of feet (which come and go). Saw the neurologist he sai all tests were fine but the mouth and jaw issues are not good. I sometimes bite my cheek or inner lower lip. I have wide spread fasciculations and an electric wriggling feeling happening under my hip scar. I have some cramps in my toes and my calves feel they may go that way too. My sleep is awful and I’m on meds at present to try and get me out of this head space but nothing is working. I live in New Zealand where our population is 5.2 million so support is limited. I see the neurologist again Jan 19 2021. I was on a low dose antidepressant for over 25 years and have read thid makes me more likely to get Als ( we call it motor neurone disease in NZ). So far my speech is unaffected but I feel like its a waiting game. My poor partner thinks Im being so negative but I cant help the way I feel at present. Thanks for reading and all replies or advice is welcome x ps. After I came out of hospital I lost 3 lbs without trying and now I have to eat twice the amount to sustain my weight at 59 kgs. This was a red marker for me as I tend to put on weight not loose it.

[Kels]

Hi just to add more info the neurologist said the jaw, mouth were good also but I know something neurological is happening within me. Thanks.

[Carolyn Barry]

I want to thank everyone who has posted here,  as I find it such a lifeline, to dealing with family and friends and their response, or lack of, to hearing I have ALS.  Your words are such a comfort, like a big hug, and I know you all are helping me in a most special way.  You walk in my shoes, and I feel that when I read what you experience with others.  You “get it” because you all live it, as I do.  My mom always had such a great way of dealing with those who said things that were a bit “off”, clearly showing their inability to understand.  She would somehow be able to say, “They mean well.”  And I know she didn’t just say the words, she meant it.  She was always able to see the good, in everyone.  I try to be like my mom, but I admit, it sure isn’t always easy!

[Kathy stitz]

Has anyone experienced suicidal thoughts because of this diagnosis? How did you deal with these thoughts?

 

A note from this site’s moderators: Please take this topic seriously. We are not a professional mental health resource. If you are struggling with suicidal thoughts or other mental health issues, please seek professional help. And see our about our forums section for our guidelines: https://alsnewstoday.com/forums/about-our-forums/

Thank you.

About Our Forums

[Deleted User]

Hello Kathy,

I think that at one point everyone who goes through this has to think about ending it. This probably is a big step in the grieving process that we also have to get through. It is a morbid thing to talk about, but it also is necessary if it goes on for any length of time. We are all different and that is so much more important to remember, but in the same way, the path we walk will take us all to the same place.

I am an optimist. I look for the light in the dead of night, when it is totally dark out, I can always see the moon and the stars. They might be hiding behind dark clouds, but I know that they are there when I cannot see them. Just the same with life with ALS, and when it really takes you to those dark places the best way to find your way back into the light is to look for it. It is always there when we open up to it. When I find the joy in my heart, it always ends up in my head!

May your eyes shine and be filled with life. It is too valuable to let waste away in depression.

[Tom Hehir]

Hi All,

I was diagnosed last August after a year of symptoms (breathing, grip strength, and speech). The first neurologist told me I might “have a year”. I freaked out. Fortunately he referred me to an ALS clinic. The neurologist there told me that ALS progression is highly variable and that he has had patients for ten years though others have gone quickly. My worse symptom  was shortness of breath which also impacted my sleep. The lack of sleep made my other symptoms worse. In November my vital capacity was at 50. My nurse prescribed a bipap and a cough assist to remove mucous. Within a couple of months I began to feel better and my vital capacity improved to 70 which enabled me to qualify for the Healy Platform Trials. Most importantly, I began to realize there was much I could do to live with my ALS. I sold my condo, a fifth floor walk-up, and moved in an accessible apartment. I banked my voice and bought magnet button shirts. I have a regular workout developed by my neuro PT.

I try to enjoy every day visiting with family and friends, breaking bread. (By the way, my last vital capacity score was 90. )

[Marianne Opilla]

Tom,

Thanks for your positivity!  Your breathing numbers are great.  I have bipod/trilogy machine and just started cough assist today.  My numbers are in the 70’s.

Yes there are many things we can do with ALS.  My family is amazed at my adaptation skills. Where there is a will, there is a way!

[David Crellin]

The cynic in me used to respond to ‘there’s light at the end of the tunnel’ with ‘Yes, but it might be the headlight of an approaching train!’

It might also be a sign of a breakthrough, the sort we’re all hoping for