embayweather

Forum Replies Created

Viewing 20 posts - 1 through 20 (of 659 total)
  • #190313
    Reply To: Nemaline 6 myopathy

    Hello and welcome Anthea and welcome back to the UK too. We have a very broad church of folk here so you may well find someone to get in contact with.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190266
    Reply To: Anyone out there with CACNA1S related myopathy?!

    Hello and welcome. Indeed, there is a limited amount of information about your son’s condition, but there is some. What questions do you have in particular? What have oyu been told already? What are your concerns? Lets see if we can help you.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190185
    Reply To: Access to work

    I would say I am staggered by their response, but frankly at my age I am not surprised. May I add to Cat’s wonderful help above and suggest you try looking on ebay or even Freecycle or similar. May sound daft, in which case put it down to old age, but there are lots of scotter and possible power chairs, sitting around doing nothing. I have seen more than a few scooters being offered for free or for peanuts locally.I have two in my own garage. One sadly is well past its sell by date now. I know you may come across the PAT testing stuff and similar things taking your own electrical stuff in but it is a possibility perhaps until the right thing comes along. May I also suggest you write to your local Rotary Club, who often fund things for local people. They may well help fund one for you, or contribute, especially if you could give a tal on MD for example. ( I am a Rotarian myself so I know what happens). I can help you find a local club if you get stuck.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190056
    Reply To: New OPMD Diagnosis

    Sounds like at least a few positives in there. Are you still under care of a specialist and maybe a SALT?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190046
    Reply To: Access to work

    Pips, I think you will find a scooter of immense help.I use mine regularly, but I also use the walking poles to keep me going as long as I can. I have tried to visualise my body as a battery. the more you use a battery the more it runs down. Come the time you need it, say to start a car, and you have not recharged it, then it will fail, much as you feel so tired and need to nap. So by using it on long journeys around school then you conserve your energy for later. You will find a balance which suits you I am sure. I have had lots of fun on my scooters over the years I have had them. One of my granddaughters renamed them zum-zums so that helped me to adjust to them. I have used them to get reluctant children into hospital and had races on the promenade with them. I know one chap who turned his into a harley Davidson lookalike. Please do consider the option and let us know how you go on.
    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190045
    Reply To: Access to work

    Pips, I think you will find a scooter of immense help.I use mine regularly, but I also use the walking poles to keep me going as long as I can. I have tried to visualise my body as a battery. the more you use a battery the more it runs down. Come the time you need it, say to start a car, and you have not recharged it, then it will fail, much as you feel so tired and need to nap. So by using it on long journeys around school then you conserve your energy for later. You will find a balance which suits you I am sure. I have had lots of fun on my scooters over the years I have had them. One of my granddaughters renamed them zum-zums so that helped me to adjust to them. I have used them to get reluctant children into hospital and had races on the promenade with them. I know one chap who turned his into a harley Davidson lookalike. Please do consider the option and let us know how you go on.
    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190044
    Reply To: Taboo Subject Mental Health with Conditions

    AS you say a significant progress towards understanding her condition. In turn that may lead on to other understandings. With the right help you will get there. We are always here if you need us.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190032
    Reply To: Sudden Deterioration

    Hello again. I cannot say I have ever noticed sudden deterioration with my FSH, except when, as now, I get very ill and I get exceedingly weak very quickly. I also have a, so far, unexplained. rash, which when it recurs, does the same thing. I think at this point I should ask if you are under the care of a Neurologist, who could give you much more specific advice on your body. If you are not, then it would be worthwhile getting a referral, albeit expecting a delay because of the virus.
    I gave up on shoelaces a few decades ago when I started wearing sandals. I use the velcro to fasten them to the point when I can take them on and off without bending down. AS I never wear socks it removes an awful lot of complications. As far as writing is concerned mine is getting even worse than when I worked in the NHS. Are you getting physiotherapy at the moment?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190029
    Reply To: Donal Here

    Hello and welcome Donal. I too have FSH and it did not make any form of impact with me until I was 50. We each travel our own path with MD so I hope that you will not have any trouble yourself. I would suggest having an x ray on your wrist to determine if it is something completely unrelated.

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189927
    Reply To: Hi, I'm Bill, I have IBM.

    Hello and welcome Bill. Please do feel free to ask questions, comment or even rant about things.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189876
    Reply To: Bed

    That sounds really positive.Sadly, services vary throughout the country so it sounds like you have a good one.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189875
    Reply To: Taboo Subject Mental Health with Conditions

    It is important that you do follow Cat’s advice, as you do need to get some extra support on your side to fight all these battles. You are both tired and exhausted mentally and physically. I do hope that the SS are not beginning to suggest that you cannot care for your children as a result. You may also try to look at other avenues to get some Legal Aid or other such support. It is about and may well be included with things like home insurance.
    Do please keep us up to date on progress.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189854
    Reply To: Bed

    I am not an OT but from what you are saying it does suggest that a hospital bed may ot do the trick. Certainly worth exploring other options, as you do see many beds advertised from time to time that will do that for you. Perhaps a more in depth discussion with the OTs would help as they may well be constrained to use only a ‘standard’ type of adjustable bed to save money.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189849
    Reply To: Bed

    Hello and welcome. I would make two comments here. When my parents were dying they wanted to do so at home, so the local council supplied beds for them each time, both were metal, hospital beds with the associated structures. It was done to make it easier for the nurses etc., who cared for them. If you have ever spent any time in a hospital bed you will know they were not built for comfort. This brings me to the second point, why do the OT’s want you to have that sort of bed? Is it for ease of access for carers? Is it for ease of getting in and out for you? Is it for better support? Is it because of your request? Knowing the reason will help you determine what beds you consider. However, I would stress that whatever bed you choose in the end, if it does not meet the support people’s needs it is possible that they would withdraw care. I know this has happened before. So do choose with all the factors considered.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189785
    Reply To: Taboo Subject Mental Health with Conditions

    Hello and welcome. I am not sure what can be suggested here but there many people reading this so I am sure someone will come forward. I have some experience of mental health problems with people I have know.It is sadly a serious problem for many, and grossly under resourced. There is a complex history there,to me, needs a number of specialists working together to get through to a meaningful conclusion. Keep a watch on the thread and see what others can suggest.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189749
    Reply To: Possible benefits how will I survive

    Joe the picture you paint is not an attractive one, and it is one that many of us have faced. You do not say who you work for, but , like everyone else, the will have a personnel manual which may tell you what your rights are should you become too ill to work. It may also be wise to talk to a union rep for advice. Some organisations have reasonably good packages for when you cannot work any longer, like the NHS for example. It may also be a good time to start looking for other opportunities, either different employment or even self employment as you may still have some lead in time before you no longer work. People on here will know I am a great supporter of physio for those of us with MD. It helped me keep going for a few years longer , and more recently helped me keep walking. I suspect you will have claimed PIP or DLA, and you should now begin to think about how your condition has changed since you did. If it is deteriorating as quickly as you indicate then this should be a priority for you. looking at the benefits that would become available should you not be able to work will give you an idea of how much money you may have available. I am sure others much more expert that I will be able to help you there. if you plan ahead now, as you appear to be starting, then, should the day come when you cannot work, much will be in place ready for you to carry on being a parent and provider.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189744
    Reply To: MD and Diabetes

    Thanks fr the thought Joe, but having been in the trade as it were for decades I already have one. My blood pressure is up a little, the option is take the pills and fall asleep. The time I have left I would rather have with my eyes open. My bigger worry is that all my intercostals have failed with MD and I have only one half of my diaphragm working sor breathing is getting increasingly challenging. Spole to the hospital about it. all appointments have been cancelled (including mine last Thursday). They do not know when I will be contacted with regard to BIPAP, or even how, until the virus has gone. So I could have a long wait. Loads of other stuff happening too, but round here at least, as you get over 55 you become more and more disposable. We will just have to see.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189735
    Reply To: MD and Diabetes

    We will just have to be patient and wait until its all gone. Sadly there seems to be a lot of variability on that date.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189666
    Reply To: MD and Diabetes

    Diggers I can understand what you mean. Thirty three years in the NHS and staffing and funding were always an issue. Particularly in my specialty. My staff and myself were always working unpaid overtime. Constantly looking for ways to do more with less. Always working through break times. I will not use the forum as a political stand, but the woes of the NHS are well known. When I joined, my mum and my wife joined, it was a great institution, full of vocational staff. Much much has changed. In many ways it is still a great institution, but the extra pressures are many, too many to cope with. My brother lives in the US where he clearly pays for treatment. It is still not all sweetness and light in that system either. The NHS staff, for the most part, work exceedingly hard to help patients, as my daughter is now doing. Like any organisation, we could all think of changes that would make a difference.Sadly, politics prevents such changes being made.
    My beef was with the virus. Everything has stopped since it arrived. My multiple treatments have stopped, my investigations have stopped, GP appointments have stopped ( I cannot access the alternative surgery). Consequently my health is suffering more and more. Thankfully, I have enough knowledge to make adjustments. Many will not. A return to some form of normality will be welcomed.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #189639
    Reply To: MD and Diabetes

    I am a type 2 diabetic and have been for nearly twenty years. Been well under control until last year when I developed a rash which was, in my opinion, dermatomyositis. I am still awaiting the correct diagnosis from my urgent referral last year. As usual everything is on hold because of the virus, and the doctors I see have never heard of FSHD for the most part, and know little about MD as a whole. My clinical background gives me a good insight into the processes of most things that involve my body, so I do keep a careful watch on it. My weight has been going down steadily the past few years, having lost around four stone. Helped in no small measure by the Liraglutide and medical cannabis I use which both suppress my appetite. I am concerned at the rapid and substantial change that was brought about going on to insulin, and I am struggling to understand why. I cannot talk to my doctor as he referred me to the Diabetic Nurse. I cannot talk to her as she is away, and when she returns I am not optimistic either as she has never ready my notes and does not know my clinical history. For me, a first step in treating a patient. So I look to find the solution myself, but not making much headway. I am sorry if this sounds like a big complaint about the NHS. there are some amazing staff who work there. Sadly, there are some who are less than amazing in our area.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
Viewing 20 posts - 1 through 20 (of 659 total)
Keep in touch