Jayarecee
New member
- Joined
- Dec 6, 2020
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 12/2020
- Country
- PH
- State
- MM
- City
- Makati
Hi everyone I just got diagnosed with MND while I was visiting my family back home due to corona. I have a few questions (sorry if I'm rambling / posting this somewhere it isn't supposed to be)
1. I live in a 3rd world country so we don't have any true MND/ALS specialists. I'm seeing a neuromuscular specialist at the moment. Will having no access to drugs have a major effect on progress? (They're not available here)
2. I have bulbar onset so I can still use my arms fairly well, legs at around 70% is working out recommended? I feel like I wanna run until I can't because I don't know when I'll be able to use my legs fully again.
3. I'm a resident of the Netherlands (Educated Migrant) but my immediate family is not there. Would it be better to move there since healthcare is cheaper and maybe the treatments will better. (?) I have my long time partner there but we're still digesting the diagnosis. Part of me doesn't wanna be a burden on her and she's all I have in the Netherlands but here at home my entire clan of cousins and aunts and uncles and siblings will be willing to help (cultural thing I guess).
Any advice or opinions would be great.
Thanks
1. I live in a 3rd world country so we don't have any true MND/ALS specialists. I'm seeing a neuromuscular specialist at the moment. Will having no access to drugs have a major effect on progress? (They're not available here)
2. I have bulbar onset so I can still use my arms fairly well, legs at around 70% is working out recommended? I feel like I wanna run until I can't because I don't know when I'll be able to use my legs fully again.
3. I'm a resident of the Netherlands (Educated Migrant) but my immediate family is not there. Would it be better to move there since healthcare is cheaper and maybe the treatments will better. (?) I have my long time partner there but we're still digesting the diagnosis. Part of me doesn't wanna be a burden on her and she's all I have in the Netherlands but here at home my entire clan of cousins and aunts and uncles and siblings will be willing to help (cultural thing I guess).
Any advice or opinions would be great.
Thanks