Taboo Subject Mental Health with Conditions

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  • #189761
    Taboo Subject Mental Health with Conditions

    Sorry if I not allowed to ask this as carer? How Do you Get to the Right help? I’m trying my best how to phrase this without offending anyone. But if I can’t ask here where can I? My Partner has Struggled with mental health issues since diagnosis. And With pre and postnatal depression being ignored by Doc’s due Myotonic Dystrophy Diagnosis during our Second child’s birth, the c section left her bed bond for weeks and lost more of her mobility. She is unable do CBT by herself or by phone and I am not allowed to help. She has struggled Immensely with frustration and is losing the ability to control her moods with The increasing loss of mobility and memory and abilities to deal with our Children (as an ex Nursery worker). She has been unable to get help from Doctors or Mental Health as the same line “due depression being part of Myotonic Dystrophy” other than Offering Varying antidepressants, Which are more Suppressants. Uses modafinil stimulant which helps some. Is there anyway she can get help/support to Give her present & future understanding system or structures in place to help her to cope with loss of memory/abilities/control both physical and mentally? Mind member, tried counselling, numerous friendships lost on both sides, she doesn’t like talking about mental health effects unless gone through similar Both physically and mentally. Numerous destructive behaviour patterns. I ask because she won’t, she has read and agreed above before I sent. Please I really know it’s not easy to talk about both these aspect of the condition. Thank you

    Carerof3myotonic
    Participant
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    Joined: 29/08/2020
    #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
    #189856
    Reply To: Taboo Subject Mental Health with Conditions

    HI and welcome to forum to you both.

    What stands out the most is that the depression increase around the enhanced decrees in mobility during and after pregnancy. Try reaching out to the charity below. Its is annoying how doctors link things constantly and solely to MD. It is often the case of depression but equally post partum depression is a chemical change. And the stance Gps taking isn’t helpful in your family moving forward

    This link is pandas foundation. you might be able to connect online or in person with groups who are going through the difficulty with mental health and parenting.

    Home page

    Have all her drugs been approved by her MD Neuro consultant. Some of these drugs can sometimes increase muscle loss as well as being helpful for nerve pain and depression. I would check that the combination isn’t clouding things. But don’t stop anything before they say so.

    What is current challenge right now with the physical aspect of MD?

    It is ok to gain acceptance at your own pace or not at all. Its your right to be angry. Its the moving forward and learning to create work arounds which we all do as time goes on that counts and by moving forward time creates peace.

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

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #189861
    Reply To: Taboo Subject Mental Health with Conditions

    Thank you Cat, last major physical and psychological crash where my partner went markedly Went down hill was after Social Services Hate Crime, On her mental health part of her condition, wasn’t acknowledged of believed and attacked her on it, attack was on all members of family, we were not allowed to defend ourselves(even with formal complaints).The social services & Gp’s cut me out of her’s and children’s Medical health and issues Or to be believed. Except The neurologists who seen it before in many later stages of condition! SEND school and disabled children’s Social Services falsified evidence & Statements after we complained that school was not following EHC let alone educating him. About a 1/10 of what they did. Services were trying to go after the kids by damaging them?

    My Partner is able to walk 20 m without support but likely to fall, arms breast height for few seconds before fall, unable to comb top of head grip down to only 2 hands holding. Stomach cramps 3-4 days a week! Tiredness most days from wake up, should us ventilator but always has a reason not to.

    We Both believe it’s an Imbalance of either brain chemicals or hormones as still able to stay mostly in control when out 1hr or 2hrs with support from carer and can deal with bills once a week but not calls, most days she is unable to cope, With nearly everything else sets off frustration also often spends hours stuck in childhood memories but no signs on standard dementia test (doctors),Was Regularly stuck in a 3 month Repeating cycle now a every few weeks. Mental health put her on combo antidepressants which never worked then gp’s won’t change or alter them even after she asked multiple times, she is unable to stand up for her self and very easily persuaded. when I attend or even a carer friend of ours attends who’s seen most of behaviour patterns we are ignored due to what Social Services Did?!?

    Sorry I am a way beyond exhausted carer and being doing it mostly on my own for 9 years now, reduced it lots, tired to keep to basics plus cause and effect.
    Also we could never afford to go legal and they knew it.

    Thanks again.
    Will try panda’s

    Carerof3myotonic
    Participant
    Posts: 0
    Joined: 29/08/2020
    #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
    #190030
    Reply To: Taboo Subject Mental Health with Conditions

    Thank you for your help found myself watching and autism video regarding ASD/PDA spectrum and the behaviour patterns that go along with it. We are now on the path for a diagnosis of PDA spectrum autism! 2/3 of way, still trying resolve other part her conditions. As neither and/or combined explain all of my partners behaviours and memory issues or repeating same stories repeatedly in a day.

    Really thank you for your patience, advice & help. The confusion on faces of DM when we described her Symptoms, should told this long ago! Sorry if I hurt or offended anyone!when you’ve looking for answers for 13 years and doc’s wanting or knowing how to help has a rather Wearing effect on you. :ty:

    Carerof3myotonic
    Participant
    Posts: 0
    Joined: 29/08/2020
    #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
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