SBHarley
Member
- Joined
- Aug 21, 2016
- Messages
- 26
- Reason
- Loved one DX
- Diagnosis
- 08/2016
- Country
- SP
- State
- Malaga
- City
- Periana
Hello all, my brother was diagnosed 2 weeks ago with ALS. He's 40 with a pregnant wife and a toddler.
His diagnosis took about 15 months from first symptom - a fall.
He now has a finger that doesn't work, an arm muscle that doesn't work, some weakness, twitches, and some spasticity. He also has headaches and sinus pain, but I don't know if these are connected.
Also I remember seeing him crying in a very unexpected way 2 years ago, so unsure if that is also part of onset.
He developed first symptoms at time of enormous stress, so at first we assumed it was just that. He has been told he is progressing at a "medium" pace and that he has been diagnosed "early", but he hasn't yet started seeing an ALS specialist clinic - he's scheduled to start I think next week.
He's been invited to attend an "end of life planning" clinic and as you can imagine is reeling from the diagnosis and struggling to cope. He's starting to sort out Power of Attorney etc so seems quite well informed on the financial and legal stuff, but maybe less so on the medical side.
I'm trying to help in any way I can, but don't really know what stage he's at or how best to support him. I live abroad so my help has to be largely emails, phone calls, letters and research.
I've read loads, inc the brilliant ALS project document from here, and have joined 3 forums, I've watched lectures and videos, and am trying to put together a sort of action plan for him.
I'd like this to include:-
1. Advice on clinical trials in the UK preferably London - he's been told there are currently none, does anyone know if this is correct?
2. Advice on complementary medicine/supplements/diet - so far I've come across cannabis (sativa or indica?), grape seed extract, coconut oil, turmeric, high fat high protein low carb food, Carnitine and alka seltzer! Has anyone tried these and found them useful or not? Any thoughts/additions/suggestions?
3. Advice on exercise - low impact range of motion exercises, swimming, stationary cycling? Anything else? Is walking ok?
4. Advice on how to access single patient IND for compassionate use of trial drugs like Edaravone, Tirasemtiv, Masitinib, NurOwn and Copper ATSM.
5. Advice on accessing the best medical care and support for PALS in the UK - any recommended specialists/clinics/ facilities in London?
I have scoured the forums and of course read lots of posts on all of the above, but if anyone has experience, or any other contributions/advice they would be ready to share it would be really helpful.
Thank you so much, I know you all have a lot to manage so understand if too busy to chime in, but hopefully it does no harm to ask, and perhaps this can become a helpful thread generally.
His diagnosis took about 15 months from first symptom - a fall.
He now has a finger that doesn't work, an arm muscle that doesn't work, some weakness, twitches, and some spasticity. He also has headaches and sinus pain, but I don't know if these are connected.
Also I remember seeing him crying in a very unexpected way 2 years ago, so unsure if that is also part of onset.
He developed first symptoms at time of enormous stress, so at first we assumed it was just that. He has been told he is progressing at a "medium" pace and that he has been diagnosed "early", but he hasn't yet started seeing an ALS specialist clinic - he's scheduled to start I think next week.
He's been invited to attend an "end of life planning" clinic and as you can imagine is reeling from the diagnosis and struggling to cope. He's starting to sort out Power of Attorney etc so seems quite well informed on the financial and legal stuff, but maybe less so on the medical side.
I'm trying to help in any way I can, but don't really know what stage he's at or how best to support him. I live abroad so my help has to be largely emails, phone calls, letters and research.
I've read loads, inc the brilliant ALS project document from here, and have joined 3 forums, I've watched lectures and videos, and am trying to put together a sort of action plan for him.
I'd like this to include:-
1. Advice on clinical trials in the UK preferably London - he's been told there are currently none, does anyone know if this is correct?
2. Advice on complementary medicine/supplements/diet - so far I've come across cannabis (sativa or indica?), grape seed extract, coconut oil, turmeric, high fat high protein low carb food, Carnitine and alka seltzer! Has anyone tried these and found them useful or not? Any thoughts/additions/suggestions?
3. Advice on exercise - low impact range of motion exercises, swimming, stationary cycling? Anything else? Is walking ok?
4. Advice on how to access single patient IND for compassionate use of trial drugs like Edaravone, Tirasemtiv, Masitinib, NurOwn and Copper ATSM.
5. Advice on accessing the best medical care and support for PALS in the UK - any recommended specialists/clinics/ facilities in London?
I have scoured the forums and of course read lots of posts on all of the above, but if anyone has experience, or any other contributions/advice they would be ready to share it would be really helpful.
Thank you so much, I know you all have a lot to manage so understand if too busy to chime in, but hopefully it does no harm to ask, and perhaps this can become a helpful thread generally.