My brother has ALD , he is 26 and doing ok considering it all he suffers with sight problems , Addison and lots of fatigue and decreased function as a person overall , but is he and will always be him and his personality is still very strong , I have helped my dad with caring for him since a very young age , and caring is my life , but I’m at the point where I am now thinking I need some help .
I’m a Woman, I’m 20 years old , I live alone and work alot, and it’s something that’s been coming for a long time but hit me like a bombshell, I finally got the bloods taken for it and signed the million consent forms and I’m waiting on results from genetic testing to see if I carry the gene, when being looked at by a doctor recently he felt I’m showing signs of deterioration in my nerves and reflexes in my legs, I also have a lot of constant pain in them but I’ve grown used to this. he said this would indicate something going on , so waiting on results but it’s seeming likely to be AMN (due to family likelihood we are testing for this first )
I currently work full time in a dementia care home as a senior carer I have done so since about 15 years old working up from a junior . I’m finding nowadays I struggle a lot with my longer shifts and I’m so exhausted on my days of that I often stay in bed the whole day , I don’t know exactly what I’m making this post for but , I’m looking for support and I guess advice or people in a similar place to help me though this I get I’m young but I have been through more things in life the people twice my age have , I’m often mistaken for a 25/30 year old because of how I act/respond to things
Some extra information would be that we know The gene has come from my mothers side and she suffered badly with AMN with her mobility being bad and having bowl and bladder problems .
So any advice or things to look out for , any recommendations to slow what is happening or to help with the pain , anything is appreciated