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Husband diagnosed on 16th January

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  • Wailywoo
    replied
    Contrary

    Hi Ellie,

    I am loving that you are finding it funny that my hubby is contrary to some others, and it seems I have company with Polly there too. Don’t get me wrong, he does get a little frustrated when he can’t do things for himself, but even that is getting a lot less now and he did initially shout at me when I didn’t do things in exactly the same way as he does them (putting the sugar in the cup first and then the tea bag hahaha), but all is down to acceptance now, I think. He is being very brave about it all and we have very emotional days - ups and downs....but generally he has become a lot more tolerant and looking for happy moments rather than the moaning negativity that was him before. More of a positive outlook now. It is very nice....

    I think tiredness etc may have a little to do with hubbys speech, but it doesn’t seem to be improving much at all with rest. I think it has been as a result of another decline and maybe as you say, he may level out again. The levels give hope and then the declines dash it again! It also seems that any exercise is quite bad and exhausts him leaving him in a worse state. Most things exhaust him now. Even showering (sitting on a bench across the bath) and dressing. Sometimes it takes until lunchtime to get ready for anything.

    Thank you so much for your input, it made me smile. We will be seeing the MND nurse on Friday morning, so will see where we are with the Riluzole then.

    Wailywoo x

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  • Ellie
    replied
    Hi Wailwoo,

    Hubby's change from grumpy man to sweetness & light just cracks me up Usually it's the other way around... Maybe he's atoning for 35yrs of grumpy maleness.

    He is legally entitled to get Riluzole, so if the generics are not available, the branded Rilutek or the liquid form, Tiglutik, must be provided. They'll complain about the cost, but let them - he is entitled to it.

    If he continues having difficulty sourcing Riluzole, please ring the MND Connect Helpline.

    I am sorry his speech has declined significantly - factors such as fatigue, stress, not getting enough calories, breathing etc. can affect 'performance' and progression. He may have a period of relative stability next.

    Love Ellie.

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  • Polly
    replied
    Hi Wailywoo, I’m very new here. I just wanted to say that I have noticed the same thing about my husband. We have never had major rows, but like most of us, at times he has been a bit niggly. But at the moment, he is not at all grumpy, despite everything that is happening to him.

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  • Gillette
    replied
    Hi Wailywoo,

    It is sad that your husband is deteriorating quickly. The rapidity brings its own difficulties. One of the things my partner and I have noticed is that by the time we have found a reasonable way of coping with the latest deterioration, I have deteriorated further and the way we had found is no longer enough. It can be so frustrating and disheartening.

    It's difficult to believe that there can be any positives with MND, but you have obviously noticed one in your husband's change in character. I hope you are able to really enjoy that aspect of him.

    Take good care of yourself, Wailywoo, and I hope you both gain a lot from your hospice visit.

    Leave a comment:


  • Wailywoo
    replied
    Hi Ellie,

    Thank you so much for your reply. I see that the dates are all in April about the Riluzole and our MND nurse has said it is not available after this....in May....

    When she phoned to say that it was not available, hubby saw this as a signal not to take it! If he starts it and the supply is interrupted again, where will this leave him? What affect might this have? Also, I am thinking it may be all too late for him to start now :-( He has started to go downhill again with me hardly able to understand what he is saying to me over the last few days, whereas last Thursday when the SLT visited he was speaking quite adequately. Have started to worry, but am trying to make every day a happy one for him.

    My biggest upset is that he has become (after 35 years of being with him) a lovely person and so want to hang on to how he is now as he has been quite a grumpy person throughout our relationship, even that has been quite a surprise and welcome. It is very difficult to take at the moment how fast the downhill trend is when it starts.

    I am looking forward to the hospice visit for both hubby and myself :-)

    Thank you again,

    Wailywoo

    Leave a comment:


  • Ellie
    replied
    Hi Wailywoo.

    Don't worry about your occasional Forum use - we all know how consuming caring for a family member with MND is...

    Does your husband take any meds to reduce his saliva production? There are a few different meds so if the first one doesn't suit, others are available.

    Do you know if someone will fit the HeadUp collar for him? It really ought to be done by a Physio or an OT as it's important the supports are placed correctly to give effective support - that's the beauty of the HeadUp collar, the supports go where one needs it.

    Yes, there were supply issues for Riluzole (there are threads on it) but it should be more available now?
    See http://forum.mndassociation.org/show...?9066-Riluzole


    Hope you get a nice massage at the hospice!

    Love Ellie.

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  • Wailywoo
    replied
    Hospice referral

    Thank you so much for your replies. I see it was 11th April when the last reply was posted and 9th May was the first time our SLT mentioned the hospice and complementary therapies, which I should be able to access too, and said she would refer hubby and myself. She also mentioned the local Cheshire MND, who have a meeting once a month, so we will be looking into going there too. Unfortunately found out too late that the next meeting is today...but June beckons.

    I am afraid I only tend to go on here when I have either a meltdown or partial-meltdown, like today. However, I am very grateful to anyone who has posted a reply and hope that one day I can give back with things we have experienced. Feeling like a taker....

    We also had an appointment at the hospital on 30th April for the Head Up collar, which has been ordered, but not sure how long this will take - not arrived yet. Hubby's chin is permanently on his chest when standing and this makes it very difficult to swallow any collection of saliva in his mouth. Makes it embarrassing for him if he starts to speak and has a mouthful as it goes down his front. He is making a conscious effort to pull his head up with great effort in order to swallow from time to time. He seems ok when sitting, like his back straightens out and his head comes up enough to swallow.

    I don't know if anyone has had problems with Riluzole not being available? Hubby decided to start it only to find out that it was not available at the moment. What use is starting if there is an interruption in supply? Anyway, we are waiting for the MND nurse at the end of this week to see if she has any then.

    Just thought I would put an update on here.....

    Many thanks again,

    Wailywoo

    Leave a comment:


  • Terry
    replied
    Hi Wailywoo;

    Hopefully your husband is up for trying a hospice out. They are normally used to Mnd and as Ellie says, are great places to get help to live life better.

    You should be able to self refer, so give them a ring. If you can get others like his specialist team or his doctor to do so as well, great.

    Love Terry

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  • Ellie
    replied
    Me again, sorry!

    I found this on collars/head supports https://www.mndassociation.org/wp-co...ne-disease.pdf

    The HeadUp collar is the Sheffield Snood on the sheet.

    If you want to buy an interim, inexpensive collar while waiting for the GP to order one / hospice OT / next MND Clinic appt, it should be a fairly rigid cervical collar rather than a soft foam one.

    Love Ellie.

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  • Ellie
    replied
    Hospices are fabulous places Wailywoo, strange as that may sound!

    Nearly all offer a Day Hospice which your husband can attend one day per week, often for a specified number of weeks, but he remains "linked " with the hospice. Many offer outreach nursing and some offer respite stays. He'll have access to nursing, physiotherapy, occupational therapy (OT), counselling, complementary therapy and a social worker.

    You can also access counselling and sometimes complementary therapy too.

    They often help with the form filling too.

    Often a GP refers but given hubby's seems so disinterested you can ring your local hospice and see if you can self-refer. (If you don't know your hospice, have a look at https://www.hospiceuk.org/?gclid=Cjw...hoCaQ0QAvD_BwE )

    Or maybe your community nurse could help?

    Love Ellie.

    Leave a comment:


  • Wailywoo
    replied
    Hi again,

    Thank you so much for your support and kind words.

    No we haven’t had an offer of any other collar. The speech and language therapist came today and said that they now have to go through the GP to get the collar and have written to him, so not holding out much hope there as he wasn’t interested once hubby was diagnosed by another neurologist doctor. He was very anti when asked for a DS1500 form and that took more than 4 weeks for him to do.

    One question....I notice the mention of being in contact with the hospice a couple of times now on this forum and wondered what that entailed. We haven’t had any suggestions about that from anyone.

    The idea of a warm heat pack for the pain was a good one and not something we had thought of. We had some ibuprofen gel prescribed, but that didn’t help, but helped for the knee when hubby fell, so not a waste of a prescription ;-)

    Thank you all once again.

    Warmest wishes,
    Wailywoo x

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  • Deb
    replied
    Hi Wailwoo,

    So sorry you are not getting the help, support and equipment that you need to make your husband comfortable. It must be so frustrating and it's not surprising you have had a meltdown this week. This is such a hard stage for you both, with such alot to cope with.

    Please dont ever feel guilty for asking for help on this forum because that's what it is here for. It's a unique place for practical advice from people who really understand and emotional support too for carers and people with MND. You are definitely not an "outsider" but a valued forum member.

    Sending you virtual hugs
    Love Debbie x

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  • Ellie
    replied
    Hi Wailywoo,

    Sorry you had a meltdown, totally understandable to us on the Forum!

    It's just awful to hear that a head support collar designed specifically for people with MND and which is "available on the NHS" is not available to your husband

    Was he offered an alternative collar in the meantime? There are good alternative cervical neck collars.

    I wonder if it's worth ringing the MND Connect helpline or hubby's MND Clinic might be able to get one for him? Is he linked into a hospice?

    I know how painful a weak neck can be and really empathise with what your hubby is going through He should be able to get a collar this week.

    There are quite a few types - the Hereford Collar, Miami Cervical Collar, the Headmaster, to name just a few - but his OT should assess his individual needs and provide a suitable collar.

    For the pain, try a warm heat pack and a gentle massage (with magnesium oil is even better) and/or Voltarol cream or similar. If his muscles are in spasm, he may benefit from antispasmodics or diazepam (GP can advise)

    Hope he gets a collar ASAP!!

    Love Ellie.

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  • Wailywoo
    replied
    Hello,

    Thank you to everyone who answered my last post. I have had a bit of a meltdown over the last week or so, so sorry I haven't been back to thank everyone for their kind replies. Some useful information there. We arrived at the hospital early on Monday so that we could use one of the wheelchairs provided by them that were in the entrance, so that turned out ok, but not sure we would have been able to use one if we had arrived much later.

    We have managed to be referred for a wheelchair and waiting on a contact about that. We really could do with some sort of neck support though as hubby's head is apt to drop quite a lot when walking about and is causing pain at the back of his neck and shoulders. We heard of the Head Up collar, but it is not available in our area on the NHS, but may contact the company that makes them direct in order to get him some relief. He has tried pain killers, but they don't seem to work. We seem to have a lot of help with home aids, which are useful, but not so much with the personal stuff that could make his life more comfortable.

    Well, thank you all for your kindness. I feel quite guilty asking for help as you all seem to be going through it yourselves and I am a bit of an outsider, although it has been very useful for both me and hubby reading your replies.

    My warmest wishes to you all,

    Wailywoo x

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  • Lynne K
    replied
    Hi Wailywoo, I see that you've already had good advice so I won't add to that. But I wanted to send you an electronic hug and love. Take care, Lynne x

    Leave a comment:

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