I have unfixed this post as it’s screwing up my Google page ranking – it will now make its way down the page as normal. Some questions are now being addressed, but just the easy ones! The content of this post is now in a page, above.
Please note that, due to dramatically worsening health, I can no longer respond to requests for help or advice. I can’t say for how long this might continue.
In fact, so that I won’t be tempted, to my detriment, comments are unlikely to be moderated.
While I was always happy to provide help and advice, especially on the subject of COPD, it should be born in mind that I have stage 4 COPD, serious ME/CFS, and widespread osteo arthritis (plus physical and neurological damage associated with being struck by lightning). My physical resources are, therefore, often very limited and, of late, I have seriously over-stretched myself, a state of affairs which can’t be allowed to continue.
I regret the necessity for this, but my own health has to come first, I’m afraid.
I will continue, when possible, to publish health-related, and other, posts, but will not be able to enter into any correspondence on the subjects.
Update March 22:- I don’t know if people are missing this message or ignoring it, but requests are still coming in. Some days so many that if I was able to respond to them, I’d have no time to even type this. Seriously.
So look, there is no organisation here, no backup, there’s just me, and I’m out of commission. If you have read this and decided to take a chance, you’re wasting your time. I cannot – I WILL NOT – put my health at risk by further over-reaching myself.
And as I said, above, everything I know is already on this blog and in existing comments.
The only comments I will respond to are those on this post, from well-wishers. I’m sorry, but for the foreseeable future, that’s how it has to be.
Sorry to hear your feeling low, i’ve only beeen reading you a short time, but have enjoyed your rants best wishes
alan
Thanks, Alan.
The blog will continue, but the personal advice thing – which was never my intention anyway – has just reached overload proportions and, well, there has to be a limit.
However, everything I know about COPD and benefits is actually on this blog or in my replies to comments. I’m not actually depriving anyone of information – just my personal attention.
Ron.
Hullo Ron
Take it easy and rest up until you feel better.
Thanks for all you are doing with your blog.
John
Cheers, John.
Well I want wish you the good health Ron, I discovered your wonderful Blog just a few days ago and I like your style of writing.
Sincerely,
Marina – Ukraine.
Thanks, Marina.
The blog, of course, will continue and, since my resources will be husbanded better, it may even improve!
Ron.
Oh, good – that was my first question after I read this post, which I seemed to have missed the last time I was here. I do hope you feel better and I do hope that you can – and will – continue to update.
I’m still posting – not as much as I’d like, but hopefully enough to maintain interest. Hopefully I’ll get back to normal soon, but I won’t be getting as personally involved with others as I have been – it got so it was a full-time job.
Ron.
I hope you are feeling better soon, maybe a bit of warmth and sunshine will help (well we can always hope)?! Look after yourself as you have to make yourself and your health your priority!
Thanks, Sheila.
Now all I have to do is get rid of the cold a friend was kind enough to share with me. Thanks, Alan!!!
Ron.
@Ron
Hello there. I dropped in to visit and to wish you well.
All my best to you always,
TiTi
Thanks, TT
Unfortunately the cold has become something nasty, so I’m not having too much fun. Still, spring is lurking in the wings. . . If I can get my shiny (very black, very shiny and seriously cool), new mobility scooter taxed – one of Britain’s more idiotic rules – I can get out and play with it when it arrives.
Ron.
you should always put yourself first, always because no one eles will. speedy recovery from cold is not a thing we copd lets us do, so i wish you well, its a lovely blog full of info we can read so no need to reply to me or this comment.
blessings
Hi Rachel,
There’s no problem replying to comments like this – but turning out a couple of thousand words each for several people a day just isn’t possible at the moment. That might change but, for now, I need a rest.
Sorry about the delay, by the way, but Thursday is sloping off to the pub day – closely followed by collapsing in a heap evening!
Ron.
Hi, Ron,
Hey, I was just reading a forum discussion and you came down solidly on the side of using the button that pastes directly from Word, saying that their constant advice (I mean –roseclark?– and raincoaster) never to use Word was unwarranted. I just want to say you’re right. I got the same advice from roseclark two years ago, but continued to use Word because I submit to print publications, they want Word, it’s the industry standard, so, end of story. And of course my blog hasn’t deconstructed yet, either–the threat they dramatically invoke. I just had this impulse to tell you, because I thought you were brave, grabbing their (unjustified and thus arrogant) asssertion regarding Word that way, by the throat. What they did was unjust. It always rankles. And by those whose mission on the forum is supposed to be helpful!
I did learn some other things on that thread, though.
Hey, I didn’t know about your health. Very sorry to hear it. Listen, could I say something from my heart? Please forgive me if it’s pushy. Perhaps you might know that they call Christ the Great Physician, I guess because he worked so many miracles. His miracles always involved some kind of touch. Christ is gone, but one faith has kept the very oldest tradition that the eucharist really is Christ (after all, he said so in exact words not hard to research, but just as he predicted, protestantism has denied the reality of those words). So in the eucharist one may, with confidence if one believes in Christ and his words at all, or perhaps just with hope, if not–but hope is such a sweet thing when you’re sick!) touch Christ. One may. You have to be Catholic to receive the eucharist.
So sorry if this is offensive, to mention something religious. But if it were somehow to help, I’d be glad I did, afterward!
I do hope you will get better soon.
Jan Baker
I really don’t know why they perpetuate that nonsense about Word. If there was a problem, WordPress wouldn’t provide the button. It really is that simple.
Ron.
I’ve only just discovered your blog and am sorry to hear that you’re not very well. There’s one suggestion I’d like to make regarding your ME/CFS and that is to get gluten right out of your diet as soon as possible! I was terribly fatigued and basically too tired to move or get out of bed until I read online how gluten is implicated in chronic fatigue and a plethora of other illnesses. It’s called gluten intolerance and is widely undiagnosed. It is a very serious issue, so please, for your own sake just try it and see what happens. After 2 days on a gluten free diet my debilitating chronic fatigue had gone for good. Of course, I have remained gluten free and have now been thus for one year! I’ve never felt better. I have also discovered a whole heap of other foods that cause chronic fatigue in me. It has taken a long time to sort it all out but finally I feel alive once more. Please feel free to email me if you’d like any ideas or feedback from me. Kind regards.
Hello Ron , I hope your feeling a bit better , I came across you blog a few weeks ago, when I did a search about DLA. I found your blog very interesting , it is very kind of you to have helped so many people .
I read that had lived in Bootle , I originated from Bootle , but I have lived in cornwall for many years
There is a website called Bootle History it is a general site , if you have any old friends that lived in the area , its a good way to catch up , people post from around the world . Takecare Lilly
Thanks, Lily, I’ll have a look at that.
Ron.
Ron when I posted my comment my email address remained in the box , I will press the submit key again to see if it clears
Hi Lily,
Don’t worry, as you can see, email addresses aren’t shown.
Ron.
Hello Ron..I am a new reader. I love your site.You do not have to reply, Just know I am pulling for you. If you feel like it go to the pub and have a beer for me. I will do the same for you. Damn copd
Hi,
I’m off to the pub on Thursday, all being well. Not had a drink for three weeks, and I’ve found that beer is essential, as it offsets some of the nastier side-effects of my meds. Always good to have a medical reason to get hammered, I always say!
Ron.
Hi ron ,just to let you know i’ve tried Vinpocetine and it has helped my copd. perhaps you could look into this and advise others . cheers Alan
With the caveat that patent medicines should be taken with extreme caution when taking conventional drugs, as by no means all potentially harmful interactions are known (and the more drugs you take, the more complex and/or harmful any interactions will be).
Vinpocetine has a slight calcium channel blocker function, which may account for its action in COPD (if such there be in reality – there is no research that I can find other than some prior to 2003, in entirely different fields, and even they were very small trials of short duration).
Calcium channel blockers relax the smooth muscle of the vascular system. This can – and does – cause a drop in blood pressure which may not be desirable or safe. They also have a similar relaxing effect on the smooth muscle of the bronchi, and calcium channel blocker drugs are sometimes used to supplement normal COPD meds. That would be my chosen course of action (and has been for many years), not least because drugs are a known quantity, with predictable actions and reactions.
What’s known about Vinpoceteine so far is that it shouldn’t be taken by people who are taking drugs or herbs that “thin” the blood (anticlotting or antiplatelet medications), such as aspirin, Plavix (clopidogrel), Ticlid (ticlopidine), (Trental) pentoxifylline, vitamin E, garlic or ginkgo biloba. It should not be used with Coumadin (warfarin). This list is not exhaustive by any means – there will be many drugs, and classes of drugs, against which it has not been tested.
Side effects may include indigestion, nausea, dizziness, anxiety, facial flushing, insomnia, headache, drowsiness and dry mouth. It may also cause a temporary drop in blood pressure.
It shouldn’t be taken by pregnant or nursing women. The safety of vinpocetine in people with liver or kidney damage isn’t known. People with bleeding disorders, low blood pressure or seizure disorders shouldn’t use vinpocetine. It also shouldn’t be used two weeks before or after a surgical or dental procedure.
As with any serious illness, always keep your doctor informed and, if admitted to hospital, make sure they know what you’re taking too.
I would never, in all honesty, recommend a patent medicine for COPD. If your meds are proving inadequate, ask for a meds review and a referral to the local chest clinic, to try to find out why that is, at the very least. Better still, if you haven’t had one, ask for a Pulmonary Function Laboratory assessment.
Ron.
Hi there,
I hope you’re feeling well today. I found you purely by accident – looking to see if there exists a mobility scooter that I can take out in the rain. I still don’t know, but will try your sound advice on the seat covers and clothing when I get one. Shiny black scooter sounds very nice
I laughed out loud when I read your take on Self Image and the mobility scooter, so thank you for that. I hope some-one makes you smile today.
take care – lots of
Hi Gillyann,
The main electronics usually live under the rear bodywork, and are quite well protected. The problem is the controls on the tiller (which, on mine, are tucked out of the way – unusually). In the past a sheet of thin plastic (an opened out freezer bag is about right), and a roll of plastic adhesive tape (insulating tape is fine, and comes in lots of colours), have been cobbled up into a rain-proof cover. There is a rain cover being sold – I think I might have mentioned this somewhere – which covers the tiller controls OK, but prevents the forward-reverse handles from moving. Not too clever.
Seats are never waterproof, and a real bugger to dry out once wet. I really don’t know why that should be – motorbikes have had waterproof seats for years (moulded from polyurethane), so why not scooters?
If you have a poke around, there’s a lot of stuff on staying warm and dry on a scooter, and more specific stuff, like carrying shopping safely (cyclists’ panniers attached to the armrests), if you haven’t found it already.
Ron.
hi Ron ,cant access latest blog on deafness
Thanks Alan – fixed.
Bloody WordPress had saved it as a draft – it’s been doing that way too much lately.
Ron.
hi ron i was looking forward to a chat but i hope you feel a bit better . my fev is 22 and i have been following you and your advise for a while please let me no how you are geting on as this will help me with my illness as i get worse i do hope you pick up and you are right to slow down alittle as its so draining doing things when you are ill all the best lizxxxx
Hi Liz,
I’m confused by an FEV1 figure of 22 (you sure it’s not 2.2? or are you in the US where they measure differently?) FEV1 is always, in the UK, a low figure, just as Peak Flow is always in the hundreds. FEV1 is the volume of air that can be expelled from maximum inspiration in the first second, in litres. Mine fluctuates between 1.8 and 2.3.
And I’m starting to feel conspired against http://ronsrants.wordpress.com/2010/06/17/abandon-all-hope-ye-who-enter-here/ My pain meds are fighting back.
Ron.
Damn – meant to reply to your original post and missed it.
OK, bottom line is that there is no evidence (by which I mean proper, peer-reviewed research), indicating a dietary link with ME/CFS. I appreciate your gesture, but it just ain’t so, I’m afraid. And over the years I’ve eliminated pretty much everything from my diet at one time or another, including gluten – nothing made the slightest difference.
Whatever the DD is, it’s not dietary.
Ron.
PS – Sorry, I can’t engage in a debate about this.