Forum Replies Created
December 8, 2010 at 1:40 pm #77114Re: STS/Vecttor Treatment
To tie back in with MDC website the latest view from MDC/NMC:
Agree those considering should be cautious until someone somewhere can give us the real proof we need. Those few who do brave it please give us your feedback. There is continual feedback on the facebook groups i linked to before so i would suggest following them. The more people who are aware of this treatment and calling for research into it the more likely someone is to actually research it …whether it is via MDC or not.
Thanks to Kristina and those at MDC/NMC for looking into this
AndyNovember 29, 2010 at 12:09 pm #77845Re: Need Advice
Am i understanding your correctly?
Your husband runs a glass business and the factory who was supplying his shop with glass has taken money from your husband but not delivered glass to him in return?
If that is the case you could take the matter to the Small Claims court as Ranald suggests (See http://www.hmcourts-service.gov.uk/infoabout/claims/index.htm).
However, if the factory have financial difficulties and are going into administration (out of business) then your husband becomes a creditor (someone owed money). Any assets of the company (factory premises, machinery,money etc) would then be subdivided by the company administrators fairly between all creditors which might mean your husband gets only some of his money back. Though i believe your husband may have to approach the administrators to state his claim.
So you need to find out the status of the factory really as making a Small claims court claim is pointless if the factory is going out of business. One way you could do this is to ask Companies House (http://www.companieshouse.gov.uk/) to find out what you can about the factory and if they are going into administration whom the adminstrators are. There is an online search facility to see the status of a company on that website which may help.
I would advise getting proper legal advice though. As this is a business matter i would suggest your husband contact the bank he has his business account with. Alternatively you could ask advice at your local Business Link (see http://www.businesslink.gov.uk/).
I’m not a legal expert but i hope that helps and gives you somewhere to start.November 29, 2010 at 11:09 am #77679Re: Christmas Bonus
Still better than a kick in the teeth! Not sure if it’s still given but for WTC it used to be £5 christmas bonus. I like the way the letter goes onto say words to the effect “we might reassess you and take away your DLA altogether”…very touching! I wonder how many people phone them up worriedly thinking they will lose their DLA after the letter though?November 27, 2010 at 6:12 pm #77564Re: How do you cope with the winter weather?
ha yeah…well i certainly needed a bit of a stiffer drink before the day was out!
I know your joking paul, but do others find that if you fall over or struggling in public that you get the feeling that everyone whose staring at you is giving you the same look given to a drunk! It’s happened to me a few times and whilst i know I shouldn’t worry what others think it still always gets to me. Most recently happened to me trying to get down steps outside of a pub after having just a pint with a whole crowd of people there to listen to live music watching..could literally feel the looks piercing through me! I had thought the pub would be more accessible but the band were blocking the accessible entrance and i didn’t want to disappoint those i’d gone with…otherwise i’d have gone straight home. I’m guessing this is more of an issue for those of us not as visibly disabled as those whom are wheelchair-bound though. Some of it’s probably just in my head but i do think there is a bit of a “your not in a wheelchair so your not disabled” thing going on.November 27, 2010 at 3:00 pm #77561Re: How do you cope with the winter weather?
Hmmm i think maybe i should have the heating on more….
After i posted here yesterday i went to get some lunch. Put my plate on the dining table complete with a glass full of ribena. Turned around to close the serving hatch and my legs totally vanished from under me. Fortunately i didn’t hurt myself but the leg snapped off the table, piles of books on table fell to floor, chairs, me and my lunch went crashing to the floor and ribena flew everywhere – though the glass didn’t break. Dog came running to my rescue saw i was ok then tried to take advantage of the situation by trying to steal my cheese Took me the rest of the day clearing up the carnage but managed to fix the table (though i think it’s days are numbered) and the carpet cleaner got all the ribena out of the carpet! Never did get my lunch!
Wasn’t one of my better days…though it could get worse as today when wiping condensation off the bathroom window i managed to knock a small mirror to the floor which smashed to pieces..so i’m resigned to 7 years of bad luck now! I’m not generally that clumsy though the mirror incident was nothing to do with my condition.
Still i do think that the table incident could have been avoided if i’d had the heating on sooner. Luckily i didn’t break anything and not even a bruise to show for it! The good thing that came out of it was the carpet is the cleanest it’s been for ages!November 26, 2010 at 2:02 pm #77555Re: How do you cope with the winter weather?
I think the key is to keep as active as you can within reason to keep the blood flowing to all extremities but i’m a becker’s MD guy so still pretty much mobile. A bit of fresh air helps too else you end up feeling lethargic. I avoid going out if it’s icy (fortunately not often on the south coast) as i know if i slide i’ll end up on the deck. A canadian friend with same condition as me i think has some sort of spikes to strap to his shoes..but their weather conditions are far worse than the UK in winter!
I have a walking pole with a basket on the base (to stop it going too deep in soft ground) and removeable rubber tip that reveals a carbon steel tip which i’m sure would be great in the snow and ice…great for around the garden and i’m sure i could use to defend myself if needed!
Like ranald’s suggestion of alcohol…would never guess your a scot by your chosen tipple (i’m more of stella man or sometimes cider) ..though urm i do find i’m a bit less stable on my feet the day after if i’ve gone beyond a couple of pints!
I don’t actually have the heating on in the day if i can help it – too expensive and urm i don’t get cold weather payments even if they did kick in where i am. Don’t have the heating on at moment but expect by 3pm i’ll have to put it on for an hour – the doggy whines when he is too cold (!) – incidentally he also comes to my rescue if i fall and is far better than a hot water bottle! I find it’s worth going outside when it’s cold for a few minutes as when you come back in you’ll feel so much warmer!
Not got any thermals to wear but might consider it if the coldness continues!November 25, 2010 at 7:04 pm #77113Re: STS/Vecttor Treatment
Nice to know there’s talking going on and hopefully we’re moving in the right direction. Some independent analysis would certainly help i think. I think the path needs to be to prove it works and then worry about why it works after. Proving it works would make getting funding to prove why it works easier..whether it’s MDC or someone else.
Can see what your saying about placebos…but perhaps the standard research trial route needs to be bent to deal with a different approach for these sorts of treatments..though i get that MDC has to have a set of rules to follow.
Perhaps treat someone in the UK twice a day for x number of weeks with a set of tests to assess improvements in muscle condition, flexibility, mobility, heart and lung function, general wellbeing etc then cut the treatment completely for another x weeks and monitor the same things and see the differences…then go back on the treatment for another x weeks and so on. So compare the changes in individual patients rather than between different patients.
From the way beckers affects me i know if i sit around for a couple of weeks doing very little (such as after i’ve twisted an ankle – it’s happened a few times to me) i deteriorate and feel a bit stiffer and become less mobile and less confident on my feet…then the periods i’m much more active i feel better about myself and start to see an improvement in flexibility and mobility.
My expectation of STS/Vecttor is that if the patient stops using it any improvement it’s given will gradually reverse in a similar way to my inactive periods..but somehow the levels of activity would need to be kept constant throughout a trial so it can be proven to be the treatment working. To all intents i’m taking it to be similar to exercise.
You mention other clinical management studies into exercise in other conditions…if an analogy can be made to exercise could the methods used for those studies be applied here then some of the groundwork in setting up a trial is already done or can be refined.
Anyway will leave it with you and hope a researcher or two will take on the challenge. Please keep us posted and i’ll update if i catch anything relevant..
Thanks for all your help
AndyNovember 11, 2010 at 12:05 am #77110Re: STS/Vecttor Treatment
Thought i’d follow up with a link to a bit more info on this from Parent Project MD via Sharon Hesterlee (Senior Director Research and Advocacy at PPMD) on her blog discussing this treatment and the issues/frustrations faced by charities in deciding whether to fund research/clinical studies or not.
According to the article she is in London next week for an Action Duchenne meeting and hoping to meet UK families who’ve used this treatment..maybe a good opportunity for someone at MDC , like yourself Kristina, to find out more/tag along?
As discussed in the link, the cost to carry out a clinical study and other research into this treatment is clearly quite high and without objective evidence to justify it the cost is obviously a high risk one .
Just an idea to float about:
With a bit more evidence provided from a pilot study could the cost of such research be somehow jointly funded across several different MD charities by joining forces (like MDC and PPMD and others across the globe) to dilute the cost and risk between all involved. There’s already coordination between researchers globally sharing information …a shared funding pot takes it further and could be applied to other research. Of course the majority of charity funding has to be ploughed towards a cure rather than a treatment … but then again looking into treatments such as this might reveal info leading to cures by not leaving any stones unturned.
Maybe MDC getting involved in a pilot study of those in the UK that have received this treatment would be a starting point to assess if it’s a treatment worth researching?
AndyOctober 26, 2010 at 9:20 am #77108Re: STS/Vecttor Treatment
Thanks for your reply and links..no worries the forum is meant to email you when there’s PMs and new messages on posts but i never seem to get them.
The link i posted before (http://www.paindefeat.com/wiki/PDFT/HomePage) has been updated since i last looked and has an entry for October 24th answering the questions posed by PPMD in your link. So a little bit more information has become available. I will have a look at the forum you’ve linked to when i get a chance.
I’m not intending to remortage the house to pay for this treatment and fly out to Texas just yet..though it is very easy to get excited by anything that offers a sniff of hope! I will be keeping an eye on it though and seeing how things pan out with it. Would be nice if it does help but the cost is somewhat prohibitive right now and i can’t see NHS funding it at that cost with all the cuts in government spending going on!
Beyond the obvious expense, it concerns me the effect of the treatment on the rest of the body. I’ve had time to think about this and discuss with family and one of our biggest concerns is if the treatment has any effect on heart and lung function. It is already known that complications of dilated cardiomyopathy is more of a problem in Becker’s patients than Duchenne patients because Becker patients tend to be that much more physcially active. If this treatment stimulates the circulation in my mind that means more strain is being placed on the heart and could possibly accelerate the onset of heart problems. And if the treatment does increase mobility for Duchenne patient’s could that then mean dilated cardiomyopathy becomes more of an issue for Duchenne patients? I don’t think anyone can answer yet. Also increased mobility/activity could mean adverse effects on lung function in my mind. If information and research on the treatment were more forthcoming I’d be much more tempted by it but until then i’m a bit wary. I think MD patients need to have a suitable team of medical professionals behind them to constantly monitor the effects of the treatments with more regular checkups and test such as echocardiograms (to detect cardiomyopathy) etc…and that fits in with MDC campaigning for better healthcare for MD patients.
From observing a couple of facebook groups setup by those who are using this treatment it does seem somewhat miraculous. Perhaps to good to be true? I think the jury is out until more substantiated evidence backed by research is provided..though controversial treatments are less likely to get funding in the first place especially in the current financial climate.
I think we’ll just have to wait and see and observe what happens to those brave enough to stump up enough cash to get the treatment. If the treatment does help without problems then i’m sure it will be with us soon enough by some means! Ideally we need to find cures which is clearly what alot of the research funding is aimed at – hopefully we’re not too far off!
AndySeptember 28, 2010 at 10:48 pm #76690Re: Just diagnosed with Becker Muscular Dystrophy
Steve, sorry yes i just noticed i’ve got a PM from you. There appears to be a problem with the email notification on the forum that i’ve already messaged Sam about so his aware of it. I expect i’lll get a whole load of notifications come through at some point! Bubba due in 6 months time from now. Will reply to PM shortly.September 28, 2010 at 10:37 pm #76781Re: Beckers Muscular Dystrophy
As you know from my reply on the main “hello” thread i’m one of the becker’s crowd. Posted various bits already .
Ranald, i have no daughters just yet but that could change pretty soon as we’re expecting a baby so i could have a similar predicament to you in the future if we have a girl. My sister has boys who we’ve eliminated as being affected by having my sister tested to prove she isn’t a carrier. They know their uncle has problems but has never really seemed to bother them ..they just thought it funny that i went up and down stairs on my bum like they did as toddlers! I would guess it probably won’t make much difference to your daughters at the moment if you told them and will just take it in their stride – probably more of a dilemna for you really. Hopefully by the time they have any children research will be that much further along by the time any affected sons(50:50 whether sons would be) it might not be as much of an issue as it is for us.
Be interested to know how you coped with the children when they were younger and any tips you might think i’m going to find handy!
Good that you go swimming..i used to go a while back on my own and alot more when i was much younger but think i’d worry about the getting out the pool bit now. Probably would be less bothered if i had my own pool!! Get my exercise doing things about the house and garden now but maybe should try pluck up the courage to try swimming again.
Have you tried contacting someone like the Shaw Trust (or other more specialised organisations) to get you back into work rather than the job centre. I tried looking for suitable employment nearly 5 years back now but the job centre were a bit helpless as could only help if i was on the qualifying benefits needed. I moved to an area to be with my now wife and jobs here in IT are few and far between..unless you make them yourself! At the time i was self-employed but having trouble on the sales side of things. In the end i realised it wasn’t worthwhile continuing and pulled the plug.
During a previous time of unemployment i went on a business start-up course to help me along the self-employment route and make a business plan…i think i got benefits still (or at least part of them). Any hobbies you could turn into self-employment? Don’t be put off by the paperwork…you can always pay someone to do it for you! We now rely on benefits (not jobseeker one’s though) and OH’s lowish income to get by which isn’t really enough TBH and i’m getting quite conscious that children won’t come cheap! I do miss the daily contact you get working with other people though. My ideal job would be something i could do from home again.
Nice to know we all seem to be having similar issues and so not alone.September 28, 2010 at 3:47 pm #75791Re: Say “hello” here
No no medication..except the occassional self-prescribed Nurofen. I’m under 12stone (and about 5’10) but have lost some weight in the past and noticed a difference in my legs so losing weight certainly helps . I don’t possess a wheelchair or ever used one but in the last few years i’ve become more reliant on a stick more for confidence than anything i think. I’d rather put off wheelchairs for as long as possible and keep as active as possible to try maintain the mobility i’ve got. Can’t do stairs (other than on my bum) and any steps bigger than about 2 inches are quite a problem. About 4 or 5 years ago i was living in a flat and not getting out much as i used to worry i’d not get back to the 5th floor if the lift broke …but improved alot when i moved to bungalow and started doing alot more about the house. I get tired quickly though and always overdoing things and i’ve come to learn that at least 8 hours sleep is needed everynight.September 28, 2010 at 2:48 pm #75789Re: Say “hello” here
I have becker’s like yourself but a few years older. I get backache in my lower back quite alot..i think because of the curvature on my spine which is common with our condition so i think this is quite normal. When i had physio they gave me exercises to try strengthen core muscles around lower back/pelvis area which did help though i struggle to keep motivated to do them! So i’d say the backache is a symptom of becker’s. My knees sometimes ache though i’ve got a recurring twinge in one which is the result of falling. If i’ve been standing around alot they hurt more. I suspect probs with knees are a result of compensating for weaknesses elsewhere in legs and back or maybe carrying extra weight if your not getting sufficient exercise. Shoulders ache sometimes if i’ve slept in wrong position ..used to get aching neck much more before we got a new bed so might be worth looking if you need a new bed and/or pillows. Again it could be related to compensating for weaknesses elsewhere as i know i rely alot on my arms to get up for example..though i’m quite muscular up top in comparision to my legs.
Feet..not really noticed..though if you look at my feet i have quite a high arch to them (also quite wide which may or may not be relevant). When you look at the soles of my shoes they all wear more on the outside of the heel because of a difference in gait. Do you get the same problems with all shoes? I tend to wear trainers/slippers much of the time or i found walking shoes from Wynsors (online for only about a tenner) are quite supportive.
What i would say is to try and eat healthily as carrying extra weight will put extra strain on your feet, legs and back. Exercise obviously helps with that. Of course it’s easy to preach this stuff…another matter actually practicing it!!
I would say to try and get referred for physio by your GP or hospital consultant if you have one as it is more than likely to be of benefit to you.
Hope that helps and would be interesting to hear from others with BMD too.
p.s. Sam, i noticed email notifications didn’t appear to be working for new posts then all of a sudden a whole lot came through this morning at once from a bluehost address.September 27, 2010 at 5:01 pm #75783Re: Say “hello” here
Andrew – hope you enjoyed your time in Nottingham during your degree .
Yes though i’ve not been to nottingham since 96′ so its a while back..when it was about a £1 per pint and in the days of student grants! These days you have to take out a loan just to buy a pint!September 26, 2010 at 12:54 pm #75780Re: Say “hello” here
Hi Andy – I have dabbled amateurishly into the world of html and web pages, I could do with seeking alternative hosting but not just yet. These things are wonderful when they work but get a < or a wrong and its electronic idiocy is paramount, lol. Best of luck with baby ... when is the due date?
Hi Anne Marie, Just had a brief look at your website …looks good and you’ve obviously spent a long time on it! Especially like the clever style of the homepage. One of these days I must start my own website..not even got a blog at the moment. PM me if/when you want hosting and i’ll recommend you to who i used..not the cheapest but they have a brilliant support forum i used to spend hours in – was a few years back though.
Baby is due end of March so we’ve only recently had 12 weeks scan…excited but a bit scared too how i’ll cope when wife goes back to work after but i’m sure i’ll adapt as i do with everything else.September 24, 2010 at 9:21 pm #75778Re: Say “hello” here
I’m Andrew . I have Becker’s MD and live on the southeast coast though born and bred to south-east of london. I’m 35 and was diagnosed in my late teens though it’s only really in the last 5 or 6 years that mobility problems have started to affect me.
I have a degree in Chemistry (from nottingham funnily enough oonagh!) which gives me a small incite into the way research works. I also have postgrad degree in IT and used to be a software engineer a while back and have dabbled in self-employment in website design and website hosting. Wife and I are expecting our first child so my life will soon be dominated by being a stay-at-home Dad.
Anyway i’m happy to volunteer to help out on the forum as i’ll probably become part of the forum furniture anyway…at least until the patter of little feet take over!!September 24, 2010 at 3:59 pm #76684Re: Just diagnosed with Becker Muscular Dystrophy
Thanks Kristina..had read the first ones the other week before seeing my consultant so i think i’m upto date. I tend to spend the day before seeing consultant catching up so at least we have something to talk about! I always read any article on Duchenne as they are generally relevant to becker’s too.
The article i mentioned in my previous post about correlation of exxons to onset of heart problems is here (had to dig a bit)September 24, 2010 at 3:27 pm #76681Re: Just diagnosed with Becker Muscular Dystrophy
And, andyb, I’ve changed the captcha so it’s no longer the impossibly difficult 3D one :D. Hopefully should make the sign-up process easier.
Good move! You should be able to find a phpbb plugin for a captcha with audio somewhere to cover all bases (used to be a computer programmer and so self-taught myself PHP and dabbled with PHPBB in the past as well as flogging web hosting :ugeek: ).