Elsielouise
New member
- Joined
- Jun 23, 2024
- Messages
- 2
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- UK
Please feel free to delete this if not considered appropriate here. However my situation may be helpful to some.
I am grieving the loss of my mum from ALS in May. Her diagnosis was vague and progression was fast. She passed away due to respiratory failure less than a year after a probable diagnosis. She was no longer ambulatory but could move her upper body, arms and hands. I held her hand three days before she died and felt twitching.
11 months before she died, when her diagnosis was unconfirmed and our family were all researching and hypothesising, my own body began to twitch. Left calf. Constantly. Random parts of my body. My stress levels at work were off the scale, my worries about my mum permeating my thoughts.
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And so I panicked. But I didn’t seek PCP care because I couldn’t bear my family to be worried about me too. I held it inside and decided that, if indeed it was ALS there was little I could do and progression would happen regardless. But I still experienced periods of deep panic. I tested my body by constantly walking on my heels and comparing strength in different muscle groups. I found all kinds of asymmetry.
I also watched my mum fail and become trapped in her home. I decided that, regardless of my situation I wouldn’t sit at home and contemplate my future, I would live it. That didn’t mean I haven’t grieved for months but it did mean I got outside and walked. Did things.
Fast forward to now and I have reduced stressors in my work. The fear of losing my mum has become a reality and the anxiety about her awful day to day life has gone, leaving just sadness. It is a different feeling.
I haven’t sought PCP input because a) I still figured unless something actually breaks I am wasting people’s time but b) I have now had a degree of twitching for over 12 months with no distinguishing changes.
I would urge anyone with high anxiety about this dreadful disease who may be spending time in the healthcare system or doubting test results to simply stop. To look around at the positives in their lives and enjoy that they can move. Can enjoy food and drink. And enjoy their families.
I almost certainly have BFS brought on by stress. But if it is something else I will deal with it when it is obvious I need to.
I am grieving the loss of my mum from ALS in May. Her diagnosis was vague and progression was fast. She passed away due to respiratory failure less than a year after a probable diagnosis. She was no longer ambulatory but could move her upper body, arms and hands. I held her hand three days before she died and felt twitching.
11 months before she died, when her diagnosis was unconfirmed and our family were all researching and hypothesising, my own body began to twitch. Left calf. Constantly. Random parts of my body. My stress levels at work were off the scale, my worries about my mum permeating my thoughts.
f
And so I panicked. But I didn’t seek PCP care because I couldn’t bear my family to be worried about me too. I held it inside and decided that, if indeed it was ALS there was little I could do and progression would happen regardless. But I still experienced periods of deep panic. I tested my body by constantly walking on my heels and comparing strength in different muscle groups. I found all kinds of asymmetry.
I also watched my mum fail and become trapped in her home. I decided that, regardless of my situation I wouldn’t sit at home and contemplate my future, I would live it. That didn’t mean I haven’t grieved for months but it did mean I got outside and walked. Did things.
Fast forward to now and I have reduced stressors in my work. The fear of losing my mum has become a reality and the anxiety about her awful day to day life has gone, leaving just sadness. It is a different feeling.
I haven’t sought PCP input because a) I still figured unless something actually breaks I am wasting people’s time but b) I have now had a degree of twitching for over 12 months with no distinguishing changes.
I would urge anyone with high anxiety about this dreadful disease who may be spending time in the healthcare system or doubting test results to simply stop. To look around at the positives in their lives and enjoy that they can move. Can enjoy food and drink. And enjoy their families.
I almost certainly have BFS brought on by stress. But if it is something else I will deal with it when it is obvious I need to.
