I'm afraid of Americans (I'm afraid I can't help it)

Viewing 15 posts - 1 through 15 (of 15 total)
  • #160964
    I'm afraid of Americans (I'm afraid I can't help it)

    Greetings from across the pond! 8-) My name is Shane and I am a 42 year old man with Becker’s Muscular Dystrophy who hails from the United States, specifically Kentucky. I was originally misdiagnosed as having Duchenne’s when I was three but have since been re-diagnosed with Becker’s. I fancy myself to be an artist although I use the term here loosely. I’ve found that poetry and music are good outlets for expressing my feelings and have been doing it for very long time. If you’re ever bored, feel free to check out my website: wavehellomachine.com. I’ve not had much exposure to other MD patients in my lifetime, nor have I discussed my disease all that much other than with my parents and my neurologist. I’m basically looking to connect with other people who have this disease and share experiences and advice and to shoot the breeze in general. I’m hoping you’ll all accept this Yank and welcome him into your midst. See ya’ll in the forum!

    — Shane

    Hotspur
    Participant
    Posts: 0
    Joined: 25/08/2018
    #160965
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    Hello and welcome Shane. no one will hold it against you that you are and American. my brother is an American, so I at elast, think it must be a good thing. You are certainly not alone in saying that you have had little contact with others who have MD. I was like that myself until I started going to the Neuromuscular Centre for physio. Then MD became so much more interesting. No longer a battle with a disease but I was part of a crusade.
    Really glad you are trying to express your self through music and poetry. Creativity, in whatever form, is to be applauded. I used to be a photographer for the same end.
    I am sure many others will chip in and welcome you so please stand by. Meantime it would be interesting to me at least is to here how your medical insurance deals with your condition. I guess they are not too pleased!

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #160966
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    Thanks for the welcome Mike! Good to know ya. I imagine that my insurance isn’t too thrilled with me. I’ve had to fight with them to get them to cover my Coreg (heart medication) when they wanted me to try a generic version. That was a nightmare. The generic version didn’t work at all and I was miserable. Finally, with a strongly-worded letter to them from my cardiologist, they now cover the cost. I have both Medicare and Medicaid, and with a little help from MDA I do pretty well. However, I’m sure they get irritated when it’s time to buy a new wheelchair for which I am eligible every five years. My needs are very specialized and therefore a generic set of wheels won’t do it. Everything needs to be heavily customized and that runs into money. Luckily, as I mentioned, MDA helps me to cover that. There are, however, certain things that just aren’t covered at all such as a motorized Hoyer lift that I am fortunate enough to be able to pay for out of pocket. Unfortunately, there are far too many of our disabled brethren who are in dire financial straits and simply have to go without. Speaking of which, how do you fair with your insurance situation if I may ask?

    Hotspur
    Participant
    Posts: 0
    Joined: 25/08/2018
    #160967
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    No insurance of course as I live in the UK, but largely my fight is very similar. Every piece of equipment I have needed I have had to fund myself, with no help from the state at all. Indeed they have compounded the problem by taking away some of my meds, or changing the for generic versions. Without consultation of course. More than once I have had to go ‘cold turkey’ because I was not allowed tramadol (pain killer). Fortunately I can now use medical cannabis and it has changed my life immensely. Muscle pain is almost a thing of the past, and I am no longer reliant on tramadol.But, like you I worry about those who cannot afford the things that I have done. I see it all too often. Our government does nothing but pay lip service to the problem, almost as though those of us who are disabled are now third class citizens. I once once told by our Social Services over here when they were telling me I could not have any help with some equipment, if I was a drug addict I could have had it all for free. Did not really help.

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #161150
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    I’m sorry to hear that you do not have a better situation where insurance is concerned. I wasn’t very familiar with what healthcare was like in the UK, but it doesn’t sound very good. When will the world realize that single payer or universal healthcare is the way to go? I shudder to think of all the people who actually need pain medicine and I have to continually fight with their insurance company just to make the pain stop. I’m glad to hear that medical marijuana is helping you. I really think it ought to be legal everywhere. Its health benefits are becoming more and more apparent. There’s a lot of reformation that needs to take place and our leaders just aren’t up to the task.

    Hotspur
    Participant
    Posts: 0
    Joined: 25/08/2018
    #161165
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    I am with you on the availability of cannabis for medical reasons. I do not subscribe to the thought of using it recreationally I have seen it waste too much money and resources in A&E departments. But equally I really do wonder about the many people who are refugees or disaster victims how they can manage MD and the pain it often brings.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #161166
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    I am with you on the availability of cannabis for medical reasons. I do not subscribe to the thought of using it recreationally I have seen it waste too much money and resources in A&E departments. But equally I really do wonder about the many people who are refugees or disaster victims how they can manage MD and the pain it often brings.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #161227
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    Welcome to the forum Shane.

    Sorry to hear you difficulties with insurance in the US.

    I’ve had a very different experience with NHS system for the most part. It really can depend where in the U.K. you live. I’m a Scot but see dramatic difference in services accross England.

    For most part as I say I’ve been lucky. After issues at initial diagnosis. I’ve had really great respiratory care. My second opinion scoliosis surgeon amazing. By and large have been able to access disability equipment as and when I need it from social services.

    My main issue has always been accessing physiotherapy. And this a huge issue accross the country.

    I’m proud of our nhs and shudder to think of the budget cuts that could endanger our free health care service if the powers that be get their way. It may not be perfect but I think us are Brits priveleaged to have our NHS. And what equipment I haven’t been able to get fully or part funded, I’m happy use my disability living allowance towards this in the spirit the benefit was designed for. Ie for disabled people to have personal choice in some equipment. Getting around or services.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #161284
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    MD
    Hello Shane. Your post caught my eye. I too was diagnosed as having DMD when I was around three years old, as were my sister and brother. I attend a very good unit here in London at which the doctors question my diagnosis as I am now 58. They feel I have Limb Girdle. However I had three tests for Duchenne all giving the same result. I have not attempted to be retested for Limb Girdle as I can’t see the point. The doctors agree I would receive no different treatment.
    I would like to move on to your point about insurance. We here in the UK have a distant system I’m sure you’ve heard of the National Health Service. When you get treatment free at the point of use. My experience of the NHS it’s similar to Catatude and totally different from embayweather. I have never had any issues in getting equipment. My hospital unit provide me with two nippy ventilators, cough assist, a suction machine and all the little bits such as tubing and masks free. The good thing is if I want small bits of equipment such as tubing and masks I just ring up and tell them and they post it to me immediately. Again no charge. I also have provided by my local authority a ceiling hoist, a wheelchair which is comfortable and what I require and a special bed. Also I receive funding for employing carers. The district nurse and my GP are also only a phone call away. I certainly would not want to swap our health system for one similar to yours in the USA.

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
    #161293
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    Perhaps I have been unlucky. I do know our local hospital does not get a lot of rave reviews. I have only ever been allowed one session of physio. I contacted them recently to see if that had changed and no it hasn’t. One ‘hands on’ session after that you are given a leaflet to do the work yourself. The fact I have neither the strength nor the reach is not a factor. Thus I travel 75 miles away, with an overnight stay, once a month to get treatment from a charity. I accept I am not as bad as others and thus my needs are limited but some help would have been welcomed.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #161297
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    Diggers14: it’s fascinating to me that you were also misdiagnosed at the same age I was. I really thought for the longest time that I was the only one. Now that I hear you say the the same thing I’m beginning to suspect that maybe at one point misdiagnoses were more common than I ever thought. Absolutely amazing! I’m hearing different experiences from all of you where health insurance is concerned. I find it interesting that it varies so much in your country but it still sounds better than the way it is here in the states. Thankfully, though, with all of my resources combined I’m able to get by and for me that’s really what it seems to be all about nowadays.

    Hotspur
    Participant
    Posts: 0
    Joined: 25/08/2018
    #161298
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    It’s not always miss diagnosis but advancement in the testing techniques and the ever growing patient database to compare symptoms. I myself have had a couple to md diagnosis. But with more modern testing in the last ten years they was able to pin it down to rigid spine cmd. And the actual gene fault code sepn1.

    I have a friend classed as a weak Duchenne strong Becker diagnosis.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #161645
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    That’s a very interesting point, Catatude. That leads me to believe that indeed misdiagnoses were at one point very common and they may still happen today though perhaps less with that patient database that is ever expanding. I guess as time has gone along the doctors have gotten more experience with more and more patients and that improves the accuracy of the diagnosis.

    Hotspur
    Participant
    Posts: 0
    Joined: 25/08/2018
    #161656
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    I can assure everyone, at least in my area of expertise, that differential diagnosis is by no means easy when presented with a number of different symptoms, often not well reported, clinicians are often left with a list of possible candidates. Indeed when I worked in a hospital there was more than one condition that required everything else to be ruled out before it could be diagnosed for that patient, as there was no definitive test for that condition. Thus it remains today that there are many health conditions that cannot be definitively diagnosed. Testing for conditions can come about because dedicated researchers labour intensively to find things that can be used in those tests. Where the research is being funded by large pharmaceutical or other institutions, and as such they will want the best return on their investments. As our numbers are low, and even then split into various sub groups, such development work may not be taken on as readily as other research. Thus development work will take time, and misdiagnosis can happen because the relevant test has not been developed, or possibly, if it is there will not be used because it is too expensive. This happened with my late father and my brother whose doctors both told them quite categorically that they did not have FHSD and would not arrange the test accordingly. It is extremely unlikely that both medics will have ever seen a case of FHSD before, o indeed possibly never even heard of it, but you cannot argue with medics can you? It was clear that my father had the same symptoms as I and my brother might have them. Catatude is quite correct, there have been amazing advances in testing and we should all be so grateful for it, it has allowed my children to be tested, after much persuasion by myself, and has allowed many others to be treated correctly or at least told they do not have the condition. Much of this is brought about by the untiring hard work of the people at MDUK without whom much of these advancements would not have taken place. Misdiagnosis is a fact of life in health care, and we should always work to reduce its possibility. Misdiagnosis when it is possible to be corrected by a proper and available test is unforgivable.

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #161742
    Reply To: I'm afraid of Americans (I'm afraid I can't help it)

    Mike, I think where I was lucky I managed to find a good hospital unit, which is considered the best that kind in the country. That always helps you get what you need. I also had a good GP who would do whatever I asked him.
    Moving on to the misdiagnosis point. When I was first diagnosed my brother and sister had already been diagnosed with Duchenne. I was then tested again at 15, which confirmed Duchenne and again tested 10 years ago which again confirmed Duchenne. I match the progress of DMD perfectly. It’s just that I keep going, somehow! But I do agree with Catatude diagnosis procedure knowledge has improved. I can’t be bothered to be tested for a fourth time is nothing was really be gained in relation to my treatment.
    David

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
Viewing 15 posts - 1 through 15 (of 15 total)

You must be logged in to reply to this topic.

Keep in touch