Our Curious Lifestyles

Other conditions
1

Hi all, hope you had a good Christmas!

Most of us on this website/forum have to rely on our wife’s, husbands, partners and some even rely on sons or daughters. Now, when I mention the word “rely” I am referring to a person or persons that look after you, on a daily basis. We all depend on someone to either listen to us, or guide us in some way or another, or help us physically. 

I know without my wife, daughter and son I would be stuck regarding my mobility. I am unable to use a manual wheelchair and an electric scooter – my right arm has a tendency to pull in via a spasm. I did try once but scratched our brand new car by a foot long scratch which went through to the primer which looked bad because the car was black and the primer was white! So, if you want your car scratched then by all means visit me! Lol

Seriously, what do you find to do during the day apart from being on here, I just wondered. Mainly because I received an email today from this site saying this:

Hi disabled_les

Congratulations, you've been awarded the 50 day streak badge!

"Visited every day for 50 days"

That email could be looked at from various perspectives…

1.       I am addicted to patient.info forums

2.       I have nothing else better to do

3.       I like putting my health and what I’ve been through over many years and to help many people in the process. The subject matter does not really bother me and neither does the age, some people I have had chats with are in fact younger than my own children, or sometimes around the age of my youngest daughter. Either way you can communicate in private or public or and remain anonymous.

I see myself being in the third group, I help and make people feel better by communicating with them on their level, or calming them down by listening to their problems which I have overcome myself in the past. Or even the many medications I have been on during my life.

I know many of you know that I am severely disabled in many ways, hopefully there should be no mistakes in my spelling in this message, I used Word to type it up – so I cheated a bit. I do find it difficult to type such messages without spelling or grammar mistakes, only because I cannot sit around in one place for too long without being in pain. So, I use Office 365 paid by a monthly subscription, which is quite good because as I type up messages it sends an updated copy to the iCloud, once I change from the desktop PC to the iPad then I can run Word and recall the message, so it is pretty handy.

In my spare time (a lot of it spent in pain!), I try and do abstract art and put it on my Facebook account and Photobucket. I try and go to the cinema at least twice a month, it gets me out of the house and I can watch the latest movies.

I always try and book AB (Admission Boxes) in the cinema, they give you 2 normal seats and 1 disabled space for a chair, saves me having to move out of my wheelchair. Usually, I take the kids and my wife goes home and says she can relax for a few hours before picking us back up. I must admit she does a lot for me, and sorts out the finances, I used to do that but it got to a stage where even I used to get confused with what was going out and going in the bank.

So, you may ask what do I do in my spare time, well it’s simple – I try my hands at abstract design, some come out not too bad, others look a mess! But I and the mouse have to fight to get it in the right place of the screen. Now, all I need to do is find a way of holding the iPad steady to take photographs. The joys of spasms, what I life I lead, spasms, cramps or pains.

I look forward to reading what you do in your spare time. Oh, and by the way a Happy New Year (I thought I’d get that in early just in case, I’m doing something else – no I don’t drink alcohol, just too many medications to even think about that!).

Regards,

Les.

2

Dear Les

I hope 2015 is a good one for you and with fewer spasms etc. I am sure there are many of us who will continue to look to you for comfort and information.

Now me. I found radiotherapy for all that the therapy was 60 seconds long consumed most of the day in various oblique ways. Now it is finished I must get back to normal living so far as living with prostate cancer or it may without prostate cancer any more. So I must get back into harness for support services for my wife's family history book number 2. For myself more time on my digital piano. I must also work up my skills once more on the alto recorder so I may rejoin the  local recorder group.

Also I like to read. TV is sometimes good but I tend to doze. I am rather deaf and listening is hard work. TV is easier when there is pleanty of action to follow. Wordy plays with little action are very hard work. I do not paint any more. Since a bleed in my good eye straight lines don't look straight and circles are not quite round. the differemce is minimal in general use but I don't like it in art.

Then there are the various home admin tasks which have slid woefully and that must be brought up to date. There are visits to family in Humgary and from July 2015 in Scotland. There will also be the 101 little things that we all do but cannot name at the spur of the moment.

Yes I do things other than the forum, but I do value the forum and my forum friends very highly.

Good topic Les. Thanks.

George

3

Hi les and George, you both help others, so posting is a positive experience... keep up the good work both of you, I wish you MUCH luck and better health.... Take care of yourselves.

Sincere best wishes and regards to you both..... Deirdre xxx

4

 Dear Deirdre,

That is a very kind comment. I do own a huge debt of gratitude to the forum. When I first came to the forum I was beside myself with anxiety and uncertainty. My new friends with quiet honest sympathy had me sensible and calm in time for that vital diagnosis meeting. Yes, a huge debt of gratitude. I am also touched and encouraged by your kindness. I hope you will find joy in 2015.

George xxxxx

5

Hi George,

Well we can hope for a better year in 2015, there is a few things I would not mind putting forward to Alan for consideration, basically to make life easier for us, one being “white listing”.

That’s a past time I even forgot to mention TV, we have over 230 channels available, yet I prefer to watch a movie, as long as it is active, or like you George I end up snoozing. Most of the time that is what happens. lol.

I always remember going to watch Independence Day at the cinema, bearing in mind I was on strong painkillers – well, I seen the first 5 minutes then all I seen next was the end credits! I fell asleep watching the movie, waste of money that was. lol

I would like to be normal for a week, no taking nearly 400 tablets a week, and they are even increasing them in 2015! And being able-bodied again so I could at least walk, not really worried about running. Or even just carry food and drinks around.

On the forums though I do find it relaxing, as long as I have no spasms or cramps. I wrote a post not that long ago, and people thanked me because they did not know, they were entitled to money off their electricity bills – unless, someone tells you about these things you wouldn’t know about them.

I was trying to think of topics that would entice people to post, and to see what others do in their spare time, when not on here. I find it interesting. I only found this forum by mistake, and noticed a couple of people that had the same condition I have, but a milder form – but I was welcomed well, and the others were grateful for the information I could give them about the condition in the UK, because awareness over here is slim.

Regards,

Les.

6

Hi Les, 

I don't know what 'white listing' is but if you want it it must be something that I would like.

Oh Les, if you could drop some pills, and walk around and not have spasms I should be so happy. Of course my happiness would be dim when compared to yours but it would still be real. Well, I shall pray to a great God to do a great work in you that many may rejoice and own his greatness. George

 

7

Hi Les, George and it is nice to meet you Deirdre,

Even though I am quite new to this site, I can fully understand your attraction to it. I am not use to joining in forums but have been enjoying my time on this site.

Like you rely on word to correct my spelling. The good thing about this site is people understand that it is not always possible to respond quickly to replies.

Sometimes it seems that it is easier to open up to people as they understand what it is like to have medical issues. I wish I had found the site earlier!

I am fortunate to be surrounded by close family and my days are far busier than I can handle. I write the majority of my post at 2am in the morning as the family are all sound asleep and I can enjoy a little quite time.

Les am I wright in assuming what you mean by a white list is where you could keep a list of the people you correspond with not just list of discussions?

Regards

Gloria

8

Hi George,

"White Listing" is what I guess you would class as a form of allowing certain functions, features, or permissions allowed by default. An example of this is what happened in the first post I made on this thread, I missed off the "world wide web" prefix before the main domain so this post got placed in moderation which to me is stupid, since I was referencing this website anyway, not any external ones. I tend to use one well known Neurologist in UK's website, and each time I reference it, the post goes straight to moderation, hence a reply becomes held up if I mention it.

Personally, some of moderation rules on this site are a bit over the top, I never post anything that would be outside the site's terms of use, yet you can "hit" a moderation rule block very easily, and when I posted one without the "www" prefix to this site, it was just referencing the name not the full domain, which means that this site will accept any domain without the www prefix, which seems a bit silly since a www is actually a default sub-domain used worldwide.

Now, I probably lost everyone accept Alan when he reads this and understands it. smile

George, I like reading your posts - I'm sure it was one of your posts I read before I actually joined, I know you were already on here before me, then again I have good and bad days, with a bad day I cannot even use a keyboard. My "breathing" mouse does my head in lately, guess I'll be buying a new one soon. Oh, BTW, I do have a "breathing" mouse, sounds silly, what it does is the lights on it which are 16 million variations can be set to "breath"  or flash (sort of). lol If you google breathing mouse you'll probably see what it looks like.

Regards,

Les.

9

Hi Gloria,

It is nice to meet you, I am not new to forums - I used to run a couple, designed modifcations and develop enhancements for many of them and I even used to fix them at one point.

LOL... So that idea is catching, type the message in Word and use the spellcheck. I don't use it all the time, only if I am writing quite a long message, it's auto saved to my iCloud and I just re-load it in Word on the iPad, easier if I need to move around a bit.

I have come across many people on here, and they find it easier to talk to someone online than their own families, to me it makes me feel good if I can help someone either with advice, or even informing them of various ways of doing things making it easier for them.

"White Listing" actually originates from letting certain IP addresses on numerous computers connect to the main server or website. Websites also use "Black Listings" for countries which they do not trust and "White Listings" are only allowed. But it is not always the case that it works. David Cameron recently tried to stop internet piracy going on - when it comes to computers that guy lives in the 20th Century and has no clue how things work. Many ISP's in the UK followed exactly what he told them to do and block customers accessing numerous sites carrying music and movies for downloading. Then just last weekend Sony was hacked and their most widespread movie of all time was stolen and posted worldwide, and people in the UK were downloading it, even with websites blocked. It makes me laugh, because there is no possible way to actually stop this from happening - but Cameron seems to think there is, I suppose he can try and fight a losing battle, he's useless at everything. It does not matter where you are, if you are connected to the internet - you're not safe, just look how many times the FBI has been accessed over the years, they may have very sophisticated security, but if someone wants to get in, they do. This doesn't say much for home computers, which are actually used in attacks on large companies - typical examples are Microsoft and Sony recently. The trouble is these days so many PC's are infected with virii, in some cases it only takes one person to takedown an entire corporation, and they could be using your computer to do it, and you would not even know.

Regards,

Les.

10

Hi Les,

Thank you. I think I get a shaddowy idea of a white list although I don't know what I would do with one If I was given it. I expect in using it I would catch on while leaving all the correspondents I wanted to hear from frustratingly out of contact. Perhaps I have not understood it at all, rather like the www business. Happily, it seems I can leave that to Alan. Although it does seem that the moderation process does not do much to train contributors in acceptable writing.

It does give me great pleasure that you like reading my contributions. So a double thank you for that kind comment and a thank you for the rest. I am glad there there is still much in the universe that is still a mystery to me. Almost everything in eternity is a mystery to me. So I do not think I need to get bored in ugh! . . . no words to estimate how long into eternity - probably 'how long' is not a concept in eternity anyway. Mmmmm there is a discussion point for on into the New Year, a concept allowable in this temporal universe. So are we complex creatures because we can conceive of such matters or simple creatures because we do not understand such matters? Probably simple creatures, Les and Alun aside since, I could not manage the www point and was aprehensive about the white list point. Oh well! at least I am not inhibited from wandering into all the places angels fear to tread. Best wishes as before expressed for 2015, George

11

Hi Les,

"I missed off the "world wide web" prefix before the main domain so this post got placed in moderation which to me is stupid, since I was referencing this website anyway, not any external ones."

It went for moderation as you had misspelled patient.info wink - you put patients - any internal links do not go for moderation. 

"there is a few things I would not mind putting forward to Alan for consideration, basically to make life easier for us, one being “white listing”."

I'll start a pinned discussion in the Chatroom group for site suggestions once I catch up with things. Whitelisting has already been forwarded as a suggestion and I will put a pinned discussion in the Neurological Disorders group when I have time and include the link you talk about, it's on my "to do". In the meantime, as you did in another post, just tell users to Google the name of the neurologist.

"Personally, some of moderation rules on this site are a bit over the top,"

I get more thanks for keeping the site clear of rubbish and spam than complaints. The rules need to be as they are otherwise the forums would get filled with ads/SEO and hit by spammers/trolls as per the recent call girls episode that some users here will be aware of. I do not post specific reasons for posts going for moderation in the forums as this will just help spammers get round the rules. I am more than happy to let users know why an individual post went for moderation via PM if required.

Regards,

Alan

12

Dear Alan, 

I am very happy to seek my education by PM. 

George

13

Hi George,

If I could tell you in simple terms what a "White List" is on here regarding forums, I would - but there's one problem - the post would instantly become moderated, so I tried beating around the bush so to speak. One way of describing it is like this, in financial terms.

Let's say you have 2 guys A and B, both have the same job and take home the same pay. So far, there is no difference between A or B.

Now, lets say that guy "A" likes to budget his finances, over a weekly period even though he is paid on a monthly basis (every 4 weeks, not a calendar month!). Once he works the sum out, he knows exactly what he has left over a week, but also a calendar month. Now, let's say he see's a car for $600 - a bargain so he buys it. Sensibly, he knows exactly what he can afford per week and a year. So, he is not a risk to obtaining credit should he need it, in the future.

Now, we look at guy "B", now this guy see's he has a lot of money in the bank, so he decides to go out for a drink and plays Poker and on that night he loses $1,200! Firstly, he never worked out his financies weekly or monthly, and he hasn't accounted for any unexpected bills that may come up. He sees a car priced at $900, but with interest on top he was looking at $1,500 over the year. He pays a down payment of $200, leaving him with $1,300 to pay off. So to start with he must pay over $100 a month out of his wages, while guy "A" has no bills apart from Gas, Electric and Rent mainly. If Guy "B" drops on payments then he instantly becomes "Black Listed" which makes it difficult for him to obtain future credit.

This is where a Black List is used, a White List is not required because if you're Black Listed, you are a risk if credit is required. Okay, even that looks a long winded way of describing it! lol smile

I like this part of your post:

"Almost everything in eternity is a mystery to me. So I do not think I need to get bored in ugh! . . . no words to estimate how long into eternity - probably 'how long' is not a concept in eternity anyway."

There's a saying over here, not sure if it's an American saying as well, but I noticed I could point it out in this case. When comparing something to eternity people often say to you "Well how long is a piece of string?", of course most people would say "gawd knows" or "what a stupid question". I remember going to an interview many years ago, and just before I left I asked the interviewer "When will I hear from your company regarding the position?", but the cocky little sarcastic guy said "Well, how long is a piece of string?", what he didn't expect was me to actually answer him with a logical answer! LOL So, I said "Well, that's easy - It would be twice the length from the center!", I left him dumbfounded and never got the job. lol The ironic part of it all, is that company put me and others that applied through a test with MENSA involved, so basically it was a case of an high IQ and pass the interview, which to me seemed easy, even with the sarcarstic interviewer!

It gets me how schools have changed over the years... When I was at school I knew, the outside world was going to be a big bang on head - I was lucky I got a job and asked the Manager if I could still attend school to complete 'O' Levels, he said that was fine. These days children leave school without even some really basic knowledge of the outside world, which to me is diabolical - I personally, think the cuts in schools has made more of society which combined with the likes of Facebook have created an unsociable society, teens walking around listening to music either using in-ear or proper headphones. One thing I hate is people that send me text messages, and I cannot even control my spasms in my hands - I have difficulty holding a phone let alone pressing small buttons. Both of my eldest sons left school and went to college, one studied Bricklaying and the other one studied to become a plasterer - then what happened, no one was buying houses, the economy dropped and my sons were fully qualified in their fields they studied. So, both of them went in to retail, one of is now an Assistant Manager. And of course with me around they took on jobs across the world in administering webservers with hosting companies, with my eldest even running his own website/forum. Now, both of my sons are over qualified in the Retail business, with part time jobs working remotely in the USA. Only about 4 hours a day working on Technical Support Desks.

A better day today, not so tired even though I was up at 6.00am! lol

Regards,

Les.

14

Dear Les,

Thank you for that post, especially that it was not a text. You abominate texts because of the difficulty they cause you. I abominate voice messages, or even worse, much, much worse is machine verbalised text messages on the land line. I have no idea what they are about. My dentist used them. I stood over the receptionist with I watched her remove my landline number from my record, and I insisted she did the same for my wife's record and watched her delete that too. Now the dentist only has my mobile number. Thus it is that our disabilities drive out idiosincraces. Thanks for the financial simile. I got that now. Very ingenious. 

Were you sorry you didn't get the job? I was on the interiewing end with a fairly cocky chap. When I asked him what he wanted to achieve he replied, "your job." Fair enough. His other answers were fine so he got the job. When last I heard he still hadn't. The person who did only lasted a year.

What annoys me about UK state education is that the taxpayer gats such bad value for his money.  The pupil gets such a poor return on their time. 

Over qualification is a fatal bind. The various laws to prevent predudices being used to reject an applicant but not over qualified.

I wonder what tomorrow/next year will bring. I pray for good things for you.

George

15

Hi Alan,

Hope you had a good Christmas, and a properous forthcoming New Year!

Oh, it was my fault - no wonder! You'll have to excuse me the spellchecker doesn't pick up domains.. I'll have to add that one to the dictionary.

White listing would help me, as you know I refer many people to the UK's top Consultant Neurologist Dr Jon Stone and his website, neurosymptoms of course, it covers many symptoms of Functional Episodes which I checked on here - is not really covered in detail.

Alan, one thing I haven't tried yet is if I state to anyone "if you Google certain keywords" would this cause the moderation to kick in? I normally check on various keywords and include patient.info just to see if there is any articles on the subject before informing them to go elsewhere.

I must admit spam is very low on here, I have seen a couple sneak through, but they look like they have been done manually and not bots.

I have seen many people whom setup new forums have no reCaptcha then get bombarded with ads on viagra, etc...then the SEO is changed and it just becomes a 'hive' for rubbish.

I suppose even going to extent of whitelisting when a certain meets very high or strict would not work either. I noticed the badges, posts, etc are all listed, which is what spammers would look for.

Do we have links to gov't website forms, etc - I haven't really looked I normally google them myself. I have noticed many people that come on here do not even know what benefits they are entitled to, with disabilities there is a lot of help around, yet people are not even told.

Next time (I hope there won't be!) I'll PM you..lol

Regards,

Les.

16

Hi Les ~

Although you are disabled, you are quite talented in your writing!  You can speak to us w/o confusion and I appreciate that.  I do agree, you do make people feel better or try and help, at least you have with me.  I also feel you are in the third category.

What I do in spare time. My husband and I watch our grandson one to two times a week from 6:30 am to 6:30 pm.  Luckily, he takes a good two or three hour  nap!  I know that will end one day but he gets tired when we get tired so it's a win/win.  I also paint watercolors.  I took several classes last year and found out that I had a hidden talent that I never knew I had.  I've always been good in the craft area but never tried painting.  I love it!  It's expensive so I make sure I take my time to figure out what I want to paint.  Also, we take care of all the grandkids at once (8 of them) when they are all out of school for one reason or another.  So, I prepare beforehand and either get them all a canvas to paint something they desire, they love it.  I play a lot of cards with them and a few other games.  I used to read to them but all but two are old enough to read themeselves so they aren't much interested in that anymore.

I try and get with a friend or two a couple times a month and also a couple or two a few times a month so my husband and I have some mention of a life.  I read and play games on the Kindle and use this site as much as possible unless I'm suffering from sjogrens or sarcoid or the pain I am in after two auto accidents...that is daily, like yours...24/7.

I am very interested in decorating.  I was an interior decorator for almost 10 yrs...while  my kids were growiing up and while I was taking college courses.  We moved from a 4,600 sq ft home to one a third that size so there's not much wall space for me to decorate.  One day, I'll post my paintings and interior jobs I've done...but I do feel like people would just think I'm bragging.  I'm not really.  I only brag about my grandkids smile  anything else, I find interesting seeing other's hobbies so I surmise other's may think alike.

I do watch TV.  More specific, Investigative Dectetives and the history channel along with some fun things.  Some days, I watch \more than I should but I'm retired lol (diabled retirement) so I can do what I want!  right?

Anyway, Les, good topic.  I hope you get many replies as you and I both know that this site helps one step aside from their situation temporaryily and think about other's who just may need your input.  In any situation, this site is very valuable for asking and giving help!

Thanks Les and HNY to you and  your family as well.  I hope your 2015 find you in good health and that you enjoy your time!

Warm regards,

Frustrated 

17

Happy New Year, Alan! 

I look forward to 2015 utilizing this site!  It's the number one in my book. 

Take care,

Frustrated