ALS and Depression

[diana-belland]

I have been hesitant to respond to this question because my answer involves a tragic event that I hope no one else on this Forum has ever or will ever experience in their own families or circle of friends.   My husband and I have three daughters, one deceased and two living.

Our youngest daughter, 28 years old, was diagnosed with clinical depression during the spring of 2018.   Despite months of intervention and treatment, both with medication and therapy and in patient treatment at a mental health clinic and all the love and reassurance we could give her, she was not able to overcome her illness and died by suicide on November 21, 2018.

At the time, I did not know that I had  ALS but during the first few weeks and months, I often had suicidal thoughts myself which were prompted by grief and guilt.  I began seeing a therapist but did not start an anti-depressant.  After I received my ALS diagnosis on March 4, 2019, my daughter, Laura, a physician, became concerned that I might act on my suicide ideation so she contacted my neurologist.   He prescribed Metrazapine and Ativan,  I was already taking Buspirone, prescribed by my daughter.  The Metrazapine helped me to sleep through the night and the Ativan lifted my mood, allowing me to find a way to continuing functioning on a daily basis despite my grief.

I have not been diagnosed with clinical depression.  I believe my greatest struggle is with grief and not with depression regarding the ALS.  I imagine that if Brittany had survived and were getting well, I would be fighting harder to maintain my health for as long as possible because I would want to be brave for her.   When I had spine fusion surgery in March, 2018, she came home and spent four nights in the hospital with me.  She was constantly telling me that I was making progress and that she admired how strong I was.   It’s very probable, of course, that I would be depressed about the ALS if Brittany were alive, but I like to think that it would be easier to motivate myself to stay active and not give up, knowing that she was rooting for me and I couldn’t let her down.

Like so many of us, I mourn the death of the future I thought I would have, the loss of skills earned over a lifetime, the impending loss of autonomy.   Most of the time, I really can’t distinguish between my feelings of grief and loss over my daughter’s untimely death and the feelings of depression which may be caused by ALS.  Less than a year ago, I was a person who led a highly disciplined, ordered, structured life.  I believed that life would reward me for living a healthy lifestyle, working hard at my career and being a loving, devoted mother.   Then I found myself spun out of that universe into one where I am struggling to find my footing, watching my friends lead their normal lives as if through a glass pane.

I am grateful, though, that the anti-anxiety medications I take do seem to help.   My therapist is incredibly helpful and I wish I could afford to see him more frequently.  I also draw strength and support from the Alliance of Hope for Suicide Survivors website and especially from Dagmar’s columns and these forums.

Rachel is absolutely correct to argue for greater awareness of symptoms of depression among ALS patients (and their care givers).  We must promote greater awareness of the symptoms of depression for all populations, especially for high school and college students.  Parents and family members should be educated by their pediatricians and family doctors about signs and symptoms while their children are still young.  All the love in the world does not necessarily provide parents with the skills they need in the face of severe mental illness.   Like ALS, there are no treatments which are 100% effective in curing clinical depression and other kinds of mental illness.   I hope that in the future there will be “cures” for both.

To those who may have family members suffering from depression, I would say constantly assure them of your love, your support, their value to the world and to the family.   Go with them to every doctor’s appointment and make sure they take their medications and treatments.  The causes and  cures of mental illness are in many ways as baffling still as are the causes and potential cures of motor neuron diseases, but we can’t give up hope.

Thank you for listening.   This Forum provides me with daily inspiration and motivation.   I start my day here every morning.  I am immensely grateful to Dagmar and to the other moderators and to all our members for creating this community.

[Amanda]

Diana,

Thank you for sharing such personal information. I cannot even imagine how you felt/feel facing both the loss of your daughter and diagnoses. I think the forum is very lucky to have you as a member, and I’m sure that you are helping others without even knowing it

In my other life (outside of this forum) I’m a school psychologist. I’ve worked and for years on the crisis side of things such as post-ventions, suicide and crisis response. In Florida, after the Parkland school shootings, the state has passed legislation requiring ALL school employees to be trained in Youth Mental Health First Aid, which is primarily a suicide prevention program. I’m lucky enough to have become one of the trainers. Although we focus on Youth, the principals and actions apply to anyone. Hearing your experience just drives the fact home that we need more mental health services and awareness. Depression is a dreadful illness, and I am so sorry for your loss. Thank you again for sharing and being willing to put yourself out there to help others.

[Dagmar]

Diana, thank you so much for sharing – – your detail and heartfelt honesty will surely resonate with others and quite possibly be just what one of our members needs to read to help them understand their own feelings.

We all send a healing hug to you… and to each other.

[diana-belland]

Dear Dagmar and Amanda,

Thank you so much for your compassionate replies.   I am very grateful that this forum is a “safe” place where members can admit to feelings of depression.   Since my diagnosis in early March, 2019, I have been reading your posts and columns, Dagmar. I decided immediately that I wanted to approach my ALS condition with the same positive, proactive attitude you project.   But struggling with ongoing grief and depression over my daughter’s death has made it difficult.

I’ve come to believe that a positive mindset can certainly influence quality of life with ALS and possibly even the rate of progression.  Depression can lead to social isolation, poor nutrition and abandoning therapies such as regular exercise.    I find that setting a few small goals each day helps.

Thank you again.