Author Topic: Forum feedback and suggestions  (Read 22163 times)

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #15 on: December 18, 2014, 11:54:41 am »
It looks like only moderators can create new boards. It would be good to have specific ones for each type of Amyloidosis I was looking to start one on AL Amyloid - what do folk think?

Hi Judith, welcome and thanks very much for your excellent suggestions.
When I set up the forum I intended to have boards for each type of amyloidosis.
But after some consideration and discussion, I decided to start off with just have one general discussion board until we get some discussions going and see how the forum progresses.
There may well be topics of shared interest between people with different types of amyloidosis.
Once the forum becomes active and populated, we can reconsider and divide up the existing threads if it seems sensible.

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #16 on: December 18, 2014, 12:32:03 pm »
Miriam thanks for all the hard work involved in setting this up and inviting me to be involved from the start.
I agree that having the type of amyloidosis and if patient friend by the side would be very helpful - if you haven't already lookedtake a look at  myelomabeacon.com where they have this sort of information including year diagnosis and age. I find it helps you to find people who are similar to yourself and follow their posts with interest.
I see from my first post that they have to be approved by a moderator before they appear is that really necessary? Once up and running it could become a huge task and it slows down responses. What I've found useful is in the wee small DEXA hours having quick fire back and forth exchanges on forums much like Facebook. If someone posts something offensive it can be reported and removed and repeat offenders loose access to the forum.

Thanks Judith, I'm working on deciding how best to set up the poster profile.

Posts need to be moderated as we don't want inaccurate information appearing on a  forum hosted within the NAC patient information website.
Although I'm trying my best to approve posts as quickly as possible, you're right that this will slow down the speed of exchanges. We'll have to see how the forum develops....

Judith

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Re: Forum feedback and suggestions
« Reply #17 on: December 18, 2014, 07:50:09 pm »
Thanks for the explanation Miriam I understand the issues around moderation and it's certainly easier to start with things closed and to open them up than the other way.

Annone Butler

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Re: Forum feedback and suggestions
« Reply #18 on: December 18, 2014, 08:09:26 pm »
I'm very pleased to be a member of this Forum. I'm a family member. My husband has AL Amyloidosis which affects his heart. He is treated at the NAC and also has his routine haematology appointments at the Royal Free. He was diagnosed in 2010 and is very well at the moment having had a Stem Cell Transplant in January 2012.

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #19 on: December 19, 2014, 01:18:05 pm »
Hello Annone, welcome to the forum. I look forward to reading your posts.

Lesley

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Re: Forum feedback and suggestions
« Reply #20 on: January 21, 2015, 07:32:42 pm »
Thanks millions Miriam for this. I'm hoping to ' meet' some people I have actually met.
X

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #21 on: January 21, 2015, 08:19:05 pm »
Hello Lesley,
Welcome! I hope you find the forum helpful. I look forward to hearing from you.

Lesley

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Re: Forum feedback and suggestions
« Reply #22 on: January 21, 2015, 09:00:28 pm »
Could there maybe be a link to give donations?

« Last Edit: January 22, 2015, 07:56:14 am by Miriam Vered »

Lesley

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Re: Forum feedback and suggestions
« Reply #23 on: January 21, 2015, 09:05:49 pm »
Hi Judith. I think it would be a good idea however I'm guessing whatever type of amy(Loid) you have - you feel the same? Or maybe not? It might end up being isolating if only a few ( or none) respond to one type of Amy.
X

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #24 on: January 22, 2015, 07:58:45 am »
Could there maybe be a link to give donations?




I just added it in the "Useful Links" thread near the top of the general discussion board.

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #25 on: January 22, 2015, 08:00:22 am »
Hi Judith. I think it would be a good idea however I'm guessing whatever type of amy(Loid) you have - you feel the same? Or maybe not? It might end up being isolating if only a few ( or none) respond to one type of Amy.
X


Once I see how the forum develops, I'll consider whether to split it up by types of amyloidosis.

Mark McConway

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Re: Forum feedback and suggestions
« Reply #26 on: February 02, 2015, 05:23:48 pm »
Hi Miriam,

It's nice to see that the forum is starting to develop and, from what I've read, people are contributing some very valuable posts to it.  Well done on pulling it all together!

I wondered what you and the members thought about creating a section that was purely for information that could help a patient, or her\his family, with practical information, as soon as s\he has been diagnosed with Amyloidosis.  By that, I don't necessarily mean that they are provided with more links to useful sites about the disease (although these could definitely appear there).  I'm thinking more about things like diet.  What foods did people change to eating in order to avoid salt etc.  Another one that springs to mind for me - that I would never really have thought of before my amyloidosis - was the usefulness of an aroma therapy massage.  As my muscles atrophied and my bones became sore - I found lying in bed uncomfortable.  I found a leaflet at my local hospital about a small charity that had therapists who did massages for people with cancer.  As I didn't have cancer per se, I was not entitled to the massages for free but I found them amazingly restorative and would thoroughly recommend them.

I know that many of the posts will have information like this contained within them.  However, I think it would be handy for people to be able to see, immediately, things that would help them at the most frightening stage of their journey. 

patpinchin

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Re: Forum feedback and suggestions
« Reply #27 on: February 02, 2015, 07:00:02 pm »
I agree Mark that this would be a very helpful special section. Easily accessible as such.  :)
Good to know that aromatherapy helped you. I watched a youtube video today on neuropathy. The Dr mentioned the many forms of peripheral neuropathy which is common in AL Amyloidosis. In 13 years, only 2 Drs, one of them, Dr Wechalekar at the NAC, have ever described my suffering as chronic nerve hypersensitivity. The Dr in the clip mentioned "over excited nerves" which I assume is the same thing. He talked about a combination of 2 drugs which can help. One of them I already take. It helps only a tiny bit. The Dr said that this drug works on the calcium channels. He said that if this drug helps but does not work well enough, to add in a second drug which "works on the sodium channels which are very involved when nerves are over excited".   I shall be asking my Chronic Pain Consultant about this drug.  Very helpful. This is the clip:  Managing Peripheral Neuropathy https://www.youtube.com/watch?v=v_cqb1LGREs
Pat

ziad_okeil

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Re: Forum feedback and suggestions
« Reply #28 on: February 03, 2015, 01:41:04 pm »
Very good idea, Miriam. It will help you to continuously improve the forum:

-  I agree with the suggestions of many of the other members that instead of newbie, may be "Patient, carer...etc" should be there.

- also the brief status underneath the name should indicate the type of AMY (AL, AA..etc), diagnosis date, type of treatment if any and the current status (CR, partial response..etc.). This, of course should come from the members themselves.

- I am not sure whether this is technically possible or not, but if you can dedicate a section for all the media, slides and pdf files attached to the posts from the members, it might be of a great help. May be pinned on top of the regular discussions?
We would then have a dedicated and accessible section for all the information exchanged instead of having them scattered among the various posts. But again, I am not sure if this is feasible.

Thanks and keep up the good work


« Last Edit: February 04, 2015, 12:34:38 pm by ziad_okeil »
Ziad

Miriam Vered

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Re: Forum feedback and suggestions
« Reply #29 on: February 03, 2015, 02:14:37 pm »
Thank you all for the suggestions. I'll look into the best way of implementing them.


Keep the ideas coming everyone!