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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.
 
According to clinicaltrials.gov the only interventional trial currently recruiting in England is the sod1 gene blocking trial in Sheffield. You can periodically check the site in case something is added

Tudca, methylcobalamin and lunasin are discussed here at length other supplements too. Do a search.

Exercise advice from my doctor if it takes more than an hour to recover fully it was too much. Walking may be fine but he must avoid falls

Compassionate use rules will vary by country. It will depend on the UK regulatory system which will likely be changing due to Brexit. The current system is an EU organization based in London. It would also depend on the company making the drug. Some people have found a way to buy edaravone. Also investigate the treeway group founded by 2 Dutch PALS who are working on an oral version

I think Kings is the place for MND in London. He is also not far from Oxford

I hope for UK specifics you are asking on the MNDA forum? We do have a few UK PALS here and they will likely chime in but you will get more responses from the other group for those topics
 
To start with, I would tell him to breathe. Diagnosis is overwhelming. I dont know the system in the UK but would suggest the following

1. Read the sticky on planning, newly diagnosed

2. Range of motion exercises are generally what is recommended. If he exercises, he should feel totally recovered within an hour, otherwise he has overdone it.

3. Diet- Maintaining weight is very important. Calories dont matter. He should eat and consume at will or regularly so he doesnt lose weight. As much as possible, try to make them healthy foods.

4. Legal-You need a will,power of attorney, healthcare surrogate and end of life decisions or advance directive.

5. Think about wanting a feeding tube placed and having a trach. I dont know if these are options but need to be researched and understood so a decision can be reached short notice. In writing is best.

6. Rearranging his home so there are open spaces for him to maneuver. The less clutter, the better. Also falls need to be prevented so no wall walking, furniture walking etc.

7. Think about, for the future, where all the equipment can go and help work on storage at their home. Pwc, breathing supplies, etc take a lot of room.

8. Most importantly, be a source of help and support for his family. Cook a meal, clean the house, run errands, take the kids, etc. Anything to lighten the load. Your sil is going to have more than she can handle.

Steph
 
Thank you so much Steph and Nikki - I will post this on the UK forum too. Thanks for the very helpful advice - will look into all the points you mention.
 
Hi SB
Kings college London and the Royal Free are good for second opinions his local neuro should refer him, they won't accept GP referrals unless you are in one of the London catchment boroughs.

If he has all the legal stuff under control, that is good he should have been put in touch with local support, physio SALT O.T following his diagnosis. If he has not been he can self refer for O.T and wheelchair services. It's best to refer as soon as you think you need the help as some of these services can take a while.

His local hospice can provide emotional support for him and his family and are very good at pulling all of the local services together and getting people on board.

I am sorry that he is in this position, but it's lovely that you are being there for him.

Wendy x
 
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