Factors that influence your thoughts and feelings

[Dagmar]

I believe that the only ALS-related symptoms that have a direct effect on our psychological status are Pseudobulbar Affect, and, FTD (Frontotemporal Dementia). Age,  gender, type of symptom onset are non-factors in my opinion. So, the biggest influences are: our past experiences with traumatic events (like being diagnosed with ALS) and our level of resilience and coping skills.

We learn to be resilient growing up from examples in our immediate family; how they dealt with issues. But if we didn’t have that opportunity early on, resilience and positive coping skills can be learned at any time. Having support from family and friends is a bonus… but, I know many who have had to go it alone and relied on their inner strength to maintain emotional health.

The factors that helped me were: learning as much as I could about the physiology of ALS so I wouldn’t be swayed by rumors and non-facts. Then, reading about how to develop optimism and seeing that ALS was just one part of my life; it didn’t dominate my life. Finally, when I set a positive example of how I was coping, friends and family did the same. No one said they felt sorry for me – – they continued to give me encouragement and support.

 

[Amanda]

In my day job 🙂 I’m a school psychologist in Florida. Since the Parkland shootings we have received a great deal of additional training on trauma, resilience and mental health. I am now facilitating CBT groups for youth that have experienced a traumatic event. Dagmar, you are exactly right on how people develop coping skills and resiliency. And, we can learn how to change the way we think at any age, that change can lead to a better state of mental health.  Of course we know that positive mental health directly impacts our physical health. So, pALS or caregivers have some input on what they allow to influence their thoughts and feelings. Of course it’s a roller coaster and everyone experiences a range of emotions.

[kathy-stitz]

Thanks for your responses Dagmar and Amanda! I really appreciate your insight and knowledge.

[kathy-stitz]

In my opinion, certain factors about ALS can influence someone’s thoughts and feelings.   For example, bulbar-onset ALS has a less favorable prognosis than limb-onset ALS so if a pALS has the bulbar-onset ALS, it could cause the person to be more depressed and upset if he or she is focusing on that too much.

[aloha-frank]

You are absolutely correct Kathy. I am a bulbar pALS and continue to experience a very rapid progression of the disease. I have not experienced signs of depression because I accepted my fate from the beginning and know that feeling depressed will only make things worse, not better. It is what it is, no point whining about it. I prefer to focus my limited energy on getting through every day as best I can with the love, help and support of my wife, family and friends. That said, I often get frustrated when I cannot communicate my needs or desires to anyone when I need immediate assistance. I can barely type with my remaining functional hand but when I’m away from my computer all communication is lost. Still, I’m staying focused and getting by as best I can but also hope this unbearable pain and suffering will end soon. More weeks, months, or, Heaven forbid, years more of this would be pure hell.

[kathy-stitz]

Aloha Frank, thank you for your post.   It seems like you have a great support system so that is wonderful.   I have had a lot of difficulty with coping with this diagnosis.   When you go to the doctor, you expect that they will make you better and then you will be back to the way you were before.  With ALS, though, that doesn’t happen.   There’s no cure for it and there’s not really much that the doctors can do to help those who have it.  Also insurance is paying a lot of money to go to the doctors.  It’s like a no-win situation so that’s really difficult to deal with.  All we can do is try to cope as best as possible and it’s easy to say that but a lot harder to actually do that.  I wish you well and thank you again.

 

[Amanda]

Kathy, your point of view makes sense to me. For some people, adapting to some of the physical changes may be easier than adapting to an inability to communicate effectively.  I’m sure it is all frustrating and scary.  The more I hear about some of the new trials, the more hopeful I am about a treatment.

[bill1949]

From my experience interfacing with lots of pALS online, I think biggest thing is the speed of progression. That is influenced by type of onset especially bulbar and age of onset. I’m limb onset, older age and slow progression. My attitude towards  disease is similar to those I’ve met who’ve had ALS long upwards of 5 of more years. Really hard on those younger or older even who are rapidly progressing when diagnosed. The grim prognosis of 2-3 years or less is pretty real.

[paul-tavano]

I am lucky in a way because my progression is slow. I have more time to adapt to my ever increasing limitations. For me it has always been important to stay in the present. I am ashamed to admit that I used to not want to be around PALS with advanced ALS because it was a glimpse into my future. By focusing on the now I eliminate the anxiety about what lies ahead and can fully enjoy what I can do today. I can also fully embrace PALS no matter their stage and recognize the strength they have as they fight their battle against ALS.

[astrid]

I Am a fast progressor and have a lot of difficulty to cope with that. Als is taking everything of me that makes me feel me. First my job than my hobbies no more biking.no more gardening no more cooking, them i have to wear different clothes no more zippers or buttons no more high heels but oversized   Sweaters, no more doing your own make up and  hair because you can use your hands. And than iT thakes being a mum and i cant take care of my children anymore like a reaL mom does andthat hurt a lot. They don t