Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 35

Thread: Husband diagnosed on 16th January

  1. #21
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    614
    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
    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.

  2. #22
    Forum Member
    Join Date
    Jan 2019
    Posts
    11
    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

  3. #23
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,914
    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #24
    Forum Member
    Join Date
    May 2018
    Posts
    279
    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

  5. #25
    Forum Member
    Join Date
    Jan 2019
    Posts
    11
    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

  6. #26
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,914
    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #27
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,914
    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #28
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,475
    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

  9. #29
    Forum Member
    Join Date
    Jan 2019
    Posts
    11

    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

  10. #30
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,914
    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze - No working limbs - No speech - Feeding tube - Overnight NIV.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •