Finndoodle
Member
- Joined
- Jun 1, 2024
- Messages
- 19
- Reason
- CALS
- Diagnosis
- 05/2024
- Country
- US
- State
- IN
- City
- TIPTON
I am a current CALS. A little history before I dive in…..My husband and I have been married almost 32 years. 1 year into our marriage he was diagnosed with Crohn’s disease.
We (I really mean I because I’ve done all the diet adjustments Lactose free,scheduled all Dr apts and done all the research on treatment) have been pretty successful keeping flare ups to a minimum.
In 2020 he was diagnosed with Menier’s disease and had constant panic attacks with severe vertigo. With some research and a change of diet again (low sodium), the vertigo came under control although hearing loss is progressive.
Fast forward to May 2024: A diagnosis of Bulbar ALS. Honestly, I’M TIRED. I have no family locally and re-locating near my 2 sons is not an option at this time. I’m overwhelmed and seem to be angry a lot of times. Progression seems fast but at last appointment neurologist said he wasn’t surprised.
We have a pulmonologist apt coming up and as awful and cold as this sounds, frankly, phlegm suctioning makes me feel like gagging. His hands are almost useless and his arms are weak already so it will pretty much fall on me.
I have had T1 diabetes most of my life so i struggle to keep my glucose levels in range. Some days I want to get in my car with my dog and drive away (which of course I would never do).
Is this normal??? Am I an awful person??? My husband has always been a pillar of strength and is withering away before my eyes. I believe he’s had ALS for a year or more but the multiple Drs insisted it was “allergies”. I begged him to go to neurologist early this year but he is stubborn and refused until the ENT gave up and told him this was neurological. PHEW! Sorry this was long and rambling but open to all opinions, and support!
We (I really mean I because I’ve done all the diet adjustments Lactose free,scheduled all Dr apts and done all the research on treatment) have been pretty successful keeping flare ups to a minimum.
In 2020 he was diagnosed with Menier’s disease and had constant panic attacks with severe vertigo. With some research and a change of diet again (low sodium), the vertigo came under control although hearing loss is progressive.
Fast forward to May 2024: A diagnosis of Bulbar ALS. Honestly, I’M TIRED. I have no family locally and re-locating near my 2 sons is not an option at this time. I’m overwhelmed and seem to be angry a lot of times. Progression seems fast but at last appointment neurologist said he wasn’t surprised.
We have a pulmonologist apt coming up and as awful and cold as this sounds, frankly, phlegm suctioning makes me feel like gagging. His hands are almost useless and his arms are weak already so it will pretty much fall on me.
I have had T1 diabetes most of my life so i struggle to keep my glucose levels in range. Some days I want to get in my car with my dog and drive away (which of course I would never do).
Is this normal??? Am I an awful person??? My husband has always been a pillar of strength and is withering away before my eyes. I believe he’s had ALS for a year or more but the multiple Drs insisted it was “allergies”. I begged him to go to neurologist early this year but he is stubborn and refused until the ENT gave up and told him this was neurological. PHEW! Sorry this was long and rambling but open to all opinions, and support!
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