Update on Exercise Post and Food for thought post - PMRGCAuk

PMRGCAuk

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Update on Exercise Post and Food for thought post

cycli profile image
50 Replies

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Because these posts are in real time regular reference to older posts get lost or buried. This is why we keep starting NEW posts when we could simply add our concerns or interests on existing ones and make continuity of thoughts and discussion easier. Don't really know what the answer is, just highlighting a thought maybe for admin. to think on.

As for my exercise post, I've just updated it and would appreciate your feedback on whether it is working before I move on to the next phase. Thank you.

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cycli profile image
cycli
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50 Replies

Good point re posts and time, I often look for old posts to make a comment but can’t find them.Autumn has arrived here in Cambridgeshire ☔️

Seacat30 profile image
Seacat30 in reply to

Peeing down here in Brighton. I grew up near Cambridge but nowhere is as wet as Norfolk where I went to Uni.

Queen Vic is not amused.
in reply to Seacat30

I used to visit relatives in Hove many years ago and take my boys to the mini fairgrounds on the front. 🤩

Seacat30 profile image
Seacat30 in reply to

My sister used to live in a flat behind Hove Lawns.

Brighton seafront
Seacat30 profile image
Seacat30 in reply to Seacat30

Nice that the pier has reopened after Covid.

Brighton pier
Seacat30 profile image
Seacat30

The thing that I find difficult is locating the new comments on a long post if they have been added part way through rather than right at the end.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Seacat30

That’s if it’s a reply to a reply rather than a comment on the original post- if you see what I mean.

The replies to the original post appear in chronological order to that post ….the subsequent interim replies are chronological to the reply, not the original post!

PS - sun is on its way…arrived in Dorset about half an hour ago….heading east.

cycli profile image
cycli in reply to DorsetLady

rain here thank goodness. We have been so dry the grass isn't growing fast enough to feed the sheep and coming up to tupping they need to be well fed and healthy.

Rosbud profile image
Rosbud in reply to DorsetLady

Beautiful blue sky here on Portland x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosbud

Not at 12.30 when I had my walk along Preston beach wall! Big black cloud…hope it’s gone now.

Rosbud profile image
Rosbud in reply to DorsetLady

Nasty clouds coming and going c

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosbud

No change there then 🤣😂

HeronNS profile image
HeronNS in reply to DorsetLady

Huge downpour here yesterday. Glorious today, then expectation rest of week is going to be drizzly. I overheard someone at the supermarket the other day comment on how we'd had a nice summer and I thought, no we haven't. I honestly cannot a remember a summer so humid and hot and unpleasant with so many days with just enough rain to spoil outdoor activities. We never seemed to get two days in a row of nice weather - even the weatherman commented the first few days of Fall here were the first nice days we'd had in sequence for weeks. Then I think about the rest of the world and count my blessings!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

I’ve just put garden sunshade away for the season, but keeping the chairs and table out for a bit longer…in hope if not expectation. 🤞

cycli profile image
cycli in reply to Seacat30

So tell me whether it's worth my going on with it now you can find it again seacat30. I'm hoping people will find them helpful and the right way to improve but they need to be able to reference it easily. Feedback is vital to improving it.

Seacat30 profile image
Seacat30 in reply to cycli

I wonder whether it should be done as a series of posts rather than 1 increasingly huge one. They could all have a common main title but then individual subtitles such as: 1. Ankles and feet; 2. Calves and knees; 3. Thighs etc. Just an idea?

cycli profile image
cycli in reply to Seacat30

that's a thought Seacat but might bits get lost or overlooked just doing one bit. I'll have to go over it and think. As I say it is a work in progress and new to me.

HeronNS profile image
HeronNS in reply to cycli

I'm just remembering back in my early days on this forum I created a series of posts about my use of low level light therapy, and gave each post the title of Alternative Therapy part ___ or something like that. Like Exercise any search would bring up a lot of other posts with the same keyword(s) but it does help, and once you've got one of them, the others will tend to show up in the related posts next to the one you open.

cycli profile image
cycli in reply to HeronNS

thanks heron. Will ruminate on all this tonight and then probably fall asleep :-) I'll see what this old fart can muster.

cycli profile image
cycli in reply to Seacat30

I suppose it depends on the relative value it has to people and whether or not it is benefitting them. If it works then maybe it could be pinned as a permanent reference which anyone could just click on and then do them. It's the progressive build from the easiest way to do them to a more taxing type when improved thatI'm hoping to achieve.

HeronNS profile image
HeronNS in reply to cycli

You can "Save" posts and then those ones are always available to you.

123-go profile image
123-go in reply to Seacat30

How about, 🎼 "Head and shoulders, knees and toes"?

Seacat30 profile image
Seacat30 in reply to 123-go

😀😉😀

cycli profile image
cycli in reply to 123-go

Sadly I remember that song being sung haha. Now be helpful :-)

123-go profile image
123-go in reply to cycli

If you can perform the actions you're well on your way!

cycli profile image
cycli in reply to 123-go

😂😂😂

PMRpro profile image
PMRproAmbassador in reply to cycli

It is helpful - if you did a series of posts with that title and links to the others in each update it would be fairly easy to find by searching the title or it will probably come up on the related posts. The one thing to avoid is using the word Update in the title because a load of posts saying update will appear with no link between them!!

IF your series becomes established as useful, it can be added to the FAQs under exercise although there too there will be problems if FAQs becomes too large and comprehensive so it may have to be subdivided at some point in the future - but that too is a lot of work and MrsNails has kindly taken on the admin there so only she can add/subtract/rearrange.

As DL says, this forum has more new posts in a single day than many have in a week - sometimes even in a month!

cycli profile image
cycli in reply to PMRpro

constructive as always. The number of posts is a sign of the sites relevance and the content demonstrates an intelligent use and querying intent. so refreshing not to have sock puppets and trolls messing around. I'll work on the suggestions and we'll see how things develop.

PMRpro profile image
PMRproAmbassador in reply to cycli

Quite - we have worked hard on that one!!!!!!

HeronNS profile image
HeronNS in reply to cycli

It is a brilliant site, not least because of the very experienced and knowledgeable patient experts who so kindly devote so much time to advising the rest of us. However there's another reason that this is such an active communnity - the nature of the disease itself. It's idiosyncratic, so we're all different in our medication dosage, our symptoms, our reaction to the stresses of daily living, not like something more straighforward. We don't even know what causes the disease, why some people get off fairly lightly in the doctor's expected year or two, others suffer for years and develop new afflictions, and others just settle into a long term relationship with PMR and pred with no real end in sight. This leads to conversations on line to share coping strategies, advice about how to educate the medical team, etc.

I for one really appreciate people, such as yourself, who share positive methods of dealing with the changes PMR has caused in us. We may not all be able to follow the same exercise path, but exercise is so important and having positive feedback really helps motivate us.

cycli profile image
cycli in reply to HeronNS

thank you HeronNS. As predicted yesterday i fell asleep :-) had a day off but off to bed now. will turn attn. to mobilty tomorrow and better reply with recipe or kendrew will sulk :-(

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It’s the way the way the HU platform is set up….nothing to do with individual forums or the respective Admins.

If you look at other forums, many don’t appear to be as dynamic as PMRGCA. They don’t have -

a) as many posts per 24hours as this forum does, or

b) generate as many replies per post.

- so probably don’t have the issues tracking posts as we do.

*For example the BHF forum has just under 30,000 members with 20,000 posts whereas we have just under 15,000 members with 26,000 posts

Anyone who is interested in a particular post can save it, and provided they have the correct settings on will receive email notifications on all replies (as does the originator).

It may not be perfect, but it is what it is.

cycli profile image
cycli in reply to DorsetLady

That's helpful DL. I think this forum and the proactive nature of posts is a real plus. I suppose I like to see things follow on logically. But it is in the nature of being able to post what comes to mind when we are most troubled that has to be prioritised so that people get help there and then. This format and approach achieves that I see and trumps any other approach.

SheffieldJane profile image
SheffieldJane in reply to cycli

FAQs is a help for the reoccurring questions too.

cycli profile image
cycli in reply to SheffieldJane

That's down to admin. SJ and a good point. If they prove useful then maybe that is another option. Thanks.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to cycli

FAQs are not necessarily down to Admin - in fact MrsNails does the day to day work on it. PMRpro Fran_Benson (charity Moderator) & and I have input via MrsNails. We often direct members to FAQs when answering - but anyone can do that…

123-go profile image
123-go in reply to DorsetLady

My thanks to all of you!

cycli profile image
cycli in reply to DorsetLady

echo that. A lot of work and appreciated.

Constance13 profile image
Constance13 in reply to DorsetLady

In other words "we talk too much"!!😂😂

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Constance13

Not necessarily !….

combination of lack of information in the real world about our illnesses, maybe not enough support out there either especially since COVID (despite charity’s best efforts), and we are a friendly caring bunch 😉 (that maybe talk too much sometimes).

Constance13 profile image
Constance13 in reply to DorsetLady

Guilty as charged!

cycli profile image
cycli in reply to Constance13

ditto, but claiming need to know as a newbie :-)

Constance13 profile image
Constance13 in reply to cycli

You must know an awful lot by now.🤪

cycli profile image
cycli in reply to Constance13

ha bl**dy ha :-)

HeronNS profile image
HeronNS

One thing which makes it even possible to find an old post is for us to be sure to use keywords in our title. I'm not sure but it's even likely that most significant keyword needs to be the first word, but they may have improved the search function. I've generally found it easier to google a remembered post, including the word healthunlocked as well as subject words.

If you look at the related posts list next to this post you'll see the word "update" has been picked up, not the word "exercise."

I have just googled : exercise, healthunlocked pmrgca cycli and it led me to a list of posts on HU which includes this one, Mind you, google wants to look for cycle, not cycli!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Just to add - if you check the keywords suggested when you write the original post that helps the search. I have no idea how their algorithm works but it is pretty strange judging by the suggested words!

HeronNS profile image
HeronNS in reply to PMRpro

I know, and there isn't an option to add more relevant terms.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I thought there was - or have they changed that? Ah yes, no keywords lists under a post now ...

Looks like they have offered the Topic thing - maybe PMRGCA and what you are writing about - exercise is an option I see.

HeronNS profile image
HeronNS in reply to PMRpro

It's quite a while since I tried. I must have missed the moment when you could add your own topic. :D

cycli profile image
cycli in reply to HeronNS

I have now restructured and updated my post on Mobility, stretching and exercise. I have completed this section. I have incorporated eoples ideas and hope you find it. try mobility as a keyword. Happy exercising the easy way everyone.

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