Can you help the Barts MS team?

Everyday living
1

Any particular reason why my post on the above subject has been removed? Barts Blog is from a leading London hospital and a regular source of reliable information, so a little confused.

Here it is again, but without the useful link. Edit - Swiftly resolved by MSS.

"We are looking for as many people as possible to tell us what everyday arm and hand activities are affected by their MS. This could be in any sort of activity, from getting up and dressed, cooking and eating, to more specialist hobbies, or activities conducted as part of your profession. It is all relevant and we need to know about this in as much detail as possible.

If you have 5 minutes please complete the survey below and help contribute to our project. We also need to know your EDSS score (which you can find out via the webEDSS) and the result of the 9 hole peg test (leave your details in the survey and we will post you one for free). You can complete the survey without completing the 9 hole peg test, but we do need this information too, so please leave your details if you possibly can."

http://multiple-sclerosis-research.blogspot.com/2017/12/we-need-new-way-to-measure-upper-limb.html

2

It seems; in their infinite wisdom; they also removed the questionnaire and did not replace, http://multiple-sclerosis-research.blogspot.com/

George

3

Done. It takes about 5 minutes.

Sue

1 Like
4

Completed.

Do any of you subscribe to the MS Register run by Swansea University?

Alun

5

Alun,

I was a regular respondee to MS Register surveys & questionaires for at least the last 5 years, but just emailed them requesting them to remove my details from their database (…have provided plenty of info over the years but now find this a chore and a constant reminder of physical limitations I’d rather try to ignore as much as possible).

Regards,

Dom

6

Fair enough, Dom. I can understand your viewpoint.

Best wishes,

Alun

7

Hello,

Can someone from the MS Society explain how this was allowed to happen in the first place?

This is not advertising. The Barts MS team who run the blog receive no payment from advertising or pharmaceuticals. The #ThinkHand project is innovative, inspiring and wants to help to people with advanced MS

Like Whammel I am confused

Patrick

8

I think it was just a simple mistake, which was quickly corrected, so no harm done and nothing to fuss about. Hopefully, the Barts Team get a good response, because it’s hand function that keeps us independent and not our legs.

1 Like
9

Finished survey thanks for the link.

Mind it keeps taking you away from the MS website so had to keep logging back in.

EDSS score is interesting. Being sent the 9 peg test, will be interesting as my left hand much weaker.

Survey asks what you find difficult to do - buttons, typing. opening packets etc.

Then ways you get round your difficulty. My best tool are scissors, open packets, cut up food, cut herbs, onions pasta etc.

Use stylfile clippers with rubber bands on for grip. Nail clippers but scissor action so no hard pushing required.

I went to QMC so happy to help my old college.

I’m part of the MS register too but find they ask you to fill in surveys all the time so not as active as I used to be.

Jen

1 Like
10

Those Stylfile nail clippers are absolutely lethal, aren’t they? Apart from the effortless action, I like the fact the clippings don’t ping off all over the room. Good suggestion.

11

Done.
Waiting on my 9HPT kit, and wanting to know how much difference my LH intention tremor will make.

About time someone considered upper body and not just the 25 ft timed walk.

Geoff

1 Like
12

Hello Geoff,

That is the point of the #ThinkHand campaign. Make people aware of the importance of use of upper limbs and also make sure people with an EDSS greater than 6 are included on MS drug trials.

MS and only mobility is such a 20th century idea. Everyone must think about quality of life and keeping existing functionality for as long as possible.

Patrick