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Louise 38 help after diagnosis

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    Louise 38 help after diagnosis

    My partner started with a foot tremor 7 years ago which has steadily got worse . He is now in a wheelchair full time ,in July 2018 our GP told us sean has MND It took till October to see his first consultant in motor neurone team who confirmed he has PLS MND which is rare .
    Since he has been told about this diagnosis it’s like he has given up we only met our first MND nurse 2 weeks ago and my partner has said he wants no invasive treatments as his quality of life is so poor we have no carers or help from anyone even though he has an OT and social worker everything seems to go so slowly. We got an urgent appointment to hospital as his respiratory function is now so poor they are talking about night time ventilation! Does this mean we are on the end road of this disease? I’m terrified of losing him we are both suicidal I have never known something so difficult to come to terms with I’m 38 and my partner is only 46 .
    Is there really any help out there ? Or are we just not finding it ? Any advice welcome

    #2
    Hi Louise and welcome to the forum;

    THere is help out there. It can vary and can be a bit of a post code lottery with somethings.

    Sorry to hear that the it took so long to be diagnosed and am surprised that your GP diagnosed him, this inits self is very unusual. If he thought that Mnd, MS or Parkinsons were possibilities, they normally send it to a referral.

    Mainly PLS is quite rare but many of us here have it. Whilst my breathing was affected 7 years ago it has remained nearly stable and I would not benefit from a breathing machine.

    I hope that you are both still talking and communicating well to each other.

    I was lucky, in that I got in with a hospice about 9 years ago and they have helped me fill in some of the gaps left by the others.

    Please fell free to ask any questions or just share things with us.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment


      #3
      Hi Louise, sorry about Sean's condition and the stress that you both feel. If you put 'PLS' in the search messages box you will be able to read a stash of previous messages that will hopefully be of some help to you. Any MND diagnosis is hard to take but most of us come to terms with it one way or another (despite the odd melt down). Maybe ask for the details of a specialist nurse that works in the Neurology clinic that Sean was referred to. They are usually very helpful. Also, the MND Connect people are great. You could give them a ring for advice. Take care, Lynne
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
      I'm staying positive and taking each day as it comes.

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        #4
        so sorry to learn of your diagnosis. My Husband was diagnosed 17/17/18. early morning headaches for months before. hes on bipap at night and feels better than he did because he wakes without a headache. there are people on here that hsve been on bipap for a long time. stephen hawkins used one for a long time too.

        Comment


          #5
          Hi Louise and welcome to the Forum.

          Sorry to hear of Sean’s diagnosis and that you’re both struggling so much.

          If Sean could get support services in place, life would be (dare I say) “easier”. As Terry said, see if he can be referred to the local hospice (they are NOT just for the dying, but for those with life changing illnesses too) and you’ll both get support, inc counselling. Their OT & Physiotherapist often have good clout in helping to procure items that will make a difference to mobility and daily tasks.

          As regards PLS, it is a form of MND affecting the upper motor neurones only, causing mainly weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. Life span could essentially be normal, although it may be life-limiting, depending on whether it remains as pure PLS or develops into ALS.

          Hard as this sounds right now, his diagnosis, though devasting, doesn’t mean that’s it for him. For sure, life will be different, but he can still enjoy living and I always say that counselling is the best first step to take.

          This is a link to a factsheet on PLS. It mentions a life expectancy, but, in reality, people with pure PLS can, and do, live a near normal life span. The key is to stay healthy and to manage their mobility issues with appropriate aids so they are safe from falls or injury.

          https://www.mndassociation.org/wp-co...-sclerosis.pdf

          Unfortunately the Search function on this Forum needs a minimum of 4 letters to do a search, which is such a shame as 3 letters are important for us e.g. PEG, NIV, PLS etc

          Take care.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Hi Louise and welcome to the forum.

            I’m sorry to hear about Sean’s diagnosis but as Ellie and Terry have said a PLS type of MND is not necessarily terminal. It does have it’s challenges, most of which is avoiding falls but since you say Sean is in a wheelchair that is less of an issue.

            Like any form of MND there are no two cases that present in the same way so it is pointless looking for indicators. Spasticity is often the major issue and it can be treated with drugs and exercise.

            Best wishes,
            Barry
            I’m going to do this even if it kills me!

            Comment


              #7
              This is tough and my thoughts are with you. It does seem a postcode lottery. Where we live we are being supported by the local Macmillan team who, in our area, also cover MND. As part of this they provide me (the carer of my husband) with counselling. They offer this to all the family including our children who are in their 20s. It has helped me enormously as the counsellor is part of the unit and so is familiar with the specialist nurses/OTs/Physios. It might be worth asking what they can do where you are. Also your local hospice may provide a lot of support for you both all the way through your journey. For what it's worth, I hold the faith that we are not sent anything more than we can bear and, when we need it, we will find more strength than we realised we had. Sending very best wishes, Marion

              Comment


                #8
                Thank you for all your kind words and advice we have been told that the MND team we meet in February will refer us to our local hospice in teesside so hopefully will get extra support.
                We are still struggling to get carers who can help as Sean needs lifting and we don’t have a hoist as yet just a stand aid . His breathing is weakening too his SNIP score was 25 which we found out was low and he had to have an urgent referral to the home ventilation team we have done an over night test just waiting to hear if sean needs a night time ventilator does anyone know if this means we are going into the final stages of this awful disease?? As Sean has PLS I thought it wouldnt progress as fast but he seems to have gone down hill a lot since we were told in July 2018 anyone else have this type of MND to try and make a little sense of how this is going ..

                Comment


                  #9
                  Hi Louise,

                  I’m sorry to hear that Sean is struggling with his health and especially the breathing. Sometimes the experts misdiagnose and PLS is normally pronounced after a period of a few years with MND symptoms. Very occasionally PLS can change to ALS.

                  I hope the medical team can improve the situation and make life more comfortable for Sean.

                  Best wishes,
                  Barry
                  I’m going to do this even if it kills me!

                  Comment


                    #10
                    Hi Louise so sorry you find yourself here, it’s my daughter that has this horrendous disease fairly quickly diagnosed in Sept 17 at the age of 33 a couple of months after having a baby,
                    I can relate to the suicidal feelings but we have to carry on for each other and in our case her children, we were lucky to have input from the mnd team but care for her ourselves no carers involves, she has lost the use of everything except her right hand which is failing now, her speech has gone and eating and swallowing very difficult, fortunately her breathing is ok at the min
                    she has organised to have the feeding tube inserted.
                    Everyone has given you good advice which they always do, I’m thinking of you and Sean and everyday hope it will come on the news there has been a break through. Try not to think too far ahead and take each day as it comes, all the very best to you, Sean and the rest of your family.
                    Jackie

                    Comment


                      #11
                      Hi Louise,

                      Given Sean's progression and breathing issues, I think he should be re-evaluated by his MND Consultant, with an EMG test if necessary.
                      Unfortunately that progression doesn't really fit with how PLS usually progresses.

                      IF his diagnosis is changed, there should be more of an immediate response for help - should being the operative word!

                      Re SNIP test: yes, 25 is a bit low, but if Sean had a stuffy nose or wasn't sitting upright, that would have skewed his result. It's good that his breathing is being assessed with a view to starting non-invasive ventilation (NIV) if it's needed.

                      NIV use does not mean he's in the "final stage" but it does mean he'll have better quality breathing which, in turn, should give him more energy.

                      Best wishes.

                      Love Ellie.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Hello Louise,

                        I am sorry to hear about Sean being unwell.

                        It sounds like you are caring for Sean by yourself, and it is very disappointing to hear that carers are unable to help because you haven't been provided with a hoist yet. It is unfair that carers from agencies always have to use a hoist, when we are expected to manage without one (until one is eventually provided for us).

                        Perhaps, if you have time, you could speak to Sean's OT or MND nurse about this issue, in case there is a way for you to be provided with a hoist quickly.

                        If you havn't done so already, you may wish to get some support and advice from your local MND Regional Care Development Development Adviser. The Advisers are very friendly, kind and knowledgeable. For further info and their contact details, please click on the link below:-
                        http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

                        I hope that you and Sean receive more support and help from carers etc, very soon.

                        Best wishes,
                        Kayleigh x
                        Last edited by Kayleigh; 10 February 2019, 16:53.

                        Comment


                          #13
                          Sorry to hear of your daughter Jackie that’s so sad at such a young age !!
                          I’m also caring for Sean with a little help from his mum we are trying to make the most of everything we can. I prey for a break through with this disease I have had a read of that new trail in Australia hopefully the phase2 trail will be as promising xxx

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