Announcement

Collapse
No announcement yet.

What next

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Ellie
    replied
    Hils0912 I thought as much, poor Syd.

    When his legs improve, ask the nurse about how to massage his feet and lower legs, which moves fluid UP towards the lymphnodes so it can drain. Rotating his ankles, moving each toe joint and bending the knees several times per day can also help, as can elevating his legs - a riser reclining armchair is good for this (and one should be provided for Syd) xx

    Leave a comment:


  • Hils0912
    replied
    Ellie
    The doctor and the hospice nurse seem to think that he is just retaining too much fluid and that because his feet and ankles have become that swollen, it is forcing it's way out of his legs (just to add to the fun we already have), the District Nurse is coming out again to re-dress his leg and they want him to have bloods done before they start him on water tablets (I have the urine bottles on standby for him).

    We are hopefully (she says clearing her throat) going to have a bit of a quieter week. Syd gets his power chair on 20th though when he rang them to say that we had received the ramp, they did say something about dropping the chair off a couple of days in advance (will wait and see).

    Leave a comment:


  • Ellie
    replied
    Hils0912 Blimey Hils, I'm exhausted just reading that 😁

    Did anyone know what caused Syd's leg to blister? xx

    Leave a comment:


  • Hils0912
    replied
    Well this week has been a fun week! I don't go to Specsavers, they come to us and they did on Monday morning, they turned up at the same time as the carer, who had seen the car pull up (so the carer got away lightly).

    Tuesday the ramp finally turned up, I let out such a cheer (it's the little things isn't it)? At lunch time I had someone visit me from the local carers centre to see what support I needed, found this really helpful. She did notice that Syd's leg had a big blister on it, his feet and ankles are very swollen, so we ended up calling the GP and asking if it was possible for a district nurse to visit, The district nurse rings and says she will come on Wednesday.

    Wednesday, we have a couple of nurses from the local hospice coming out to visit Syd today, They turned up and about 10 minutes later the district nurse turned up to check on his leg. She dressed it and said she would see him next week. Then got into a discussion as to how often she would be back. District nurse said only when called, hospice nurses said that she needs to come more often than that. She finally agreed to that but said that she was going back to do a report to the GP and also pass some information on to OT.

    Thursday we hadn't really had anything planned for, but when we got up Syd had received a message from the GP saying they would be in touch between 9am-6pm, and assumed it would be a phone call (like they have all been). At 12:15 the doorbell went and the GP is there, it's his first home visit, but she looked at his legs and wants bloods doing so will send a nurse out (well the district nurse is back next week) so she will probably do them along with a fresh dressing. Around 2pm we got a phone call from OT. They wanted to pop in and check that the ramp was suitable They ended up putting it together and then taking his wheel chair outside to check there would be enough room to manoeuvre it onto the street.

    So we are now back on Friday and finally had a quiet day, well except for a few calls to check everything is ok. Syd is asleep in his chair as he is warn out.. We have family visiting this weekend so hopefully we will manage to get him out and about for a little while.

    Leave a comment:


  • MMG
    replied
    We were in the same situation regarding getting a powerchair, it was in the warehouse waiting to be issued but they wouldn't issue it until we had a ramp.

    Our OT referred us to the council for the ramp, they sent someone out to provide a quote a couple of days later, then took 12 weeks to tell us we didn't qualify for funding by which time the need for the wheelchair had significantly increased and he had suffered falls. Our council don't publish funding criteria so I couldn't pre-empt the decision. Reason being - its complicated!!!!!

    It then took me less than a week to get a ramp, our sons fitted it on the day of delivery, powerchair delivered next day, then sod's law i broke my leg so couldn't get out anyway!!!!

    I would advise finding out (somehow!!!) if you meet criteria for funding so that you can save wasting time like we experienced.

    Leave a comment:


  • Olivia H
    replied
    Hils0912 it's tough and a lot for you both to adapt to in a short time span.

    I'd say get some physiotherapy input too as this may well benefit your husband, ask for a referall via the MND clinic or your GP. They can come to your home. I'd say keeping core strength and balance, particularly upper body strength when weakness is in the legs, is important to keeping mobile. I started with footdrop, falls and leg weakness. The less you use a part of your body, it does weaken more, so it's finding ways to keep movement but in a safe manner for the individual.

    There are some good 'wheelchair' workouts on YouTube too, aerobic and upper body but all remaining seated, and if you can move your legs, a footcycle, again you are sitting at all times. I cannot stand at all unless I am leaning against something, or holding onto a walker/two walking sticks...but with safe routes through the house, can get into garden, in and out of the house, use a mobility scooter to get out. With mnd, small and often is the best exercise. An American lady called Dagmar Munn has an excellent blog for keeping body movement with mnd, she herself has mnd.

    Once your hubby can settle into the new normal for him, and for you both, you can find ways to adapt, often for many years.

    All the best x

    Leave a comment:


  • Hils0912
    replied
    Sorry for not getting back to you all sooner. We have had a fun couple of weeks!! Another near fall because he thought he could do something, he couldn't so I heard my name being called and went to the rescue (again) (starting to think I need a Wonder Woman outfit).

    I tried to chase up the ramp to see where things were up to with that, but apparently the person I spoke to had to send an email to the relevant team (while she was doing that she sent an email to the planners to see where they were up to regarding the work that needs to be done on the property). As yet, we haven't had a reply. They came to measure up the husband for a power chair on Friday, but he can't have that until we have the ramp, so I did say if we don't get the ramp soon, I may have to get on to the MP to see if he can do anything.

    We are trying to remain positive, but we both have down days, but try not to take it out on each other (I can hide upstairs as he can't get up there), pull up my big girl pants and plaster on the smile when needed. He waits until I have gone to bed, and has admitted that he gets down some of the time. I have asked if he wants to speak to the doctor, but he said not at the moment.

    Leave a comment:


  • Ken
    replied
    You will be contacted by many people who are there to help. It can be a bit overwhelming. Keep a notebook and record the gist of all conversations you have. Record their name and contact details. Always end the conversations with, "so what happens next?" Although difficult, try to maintain a positive mental attitude.....these people have tough jobs and my experience is they genuinely want to help but they don't have magic wands. You get more out of people if you work with them. Good luck.

    Leave a comment:


  • MMG
    replied
    I think the acceptance that they can't do the simple things that they previously could is very hard - mentally more than physically.

    My husband had a series of falls in one week which led to him making the decision that stairs were no longer possible and we had to use a Molift to get him up and roll him around the house rather than risk his balance going again and causing injury.

    Frustratingly his legs were still strong enough to take his weight, but he just couldn't stay up. Each progression is upsetting, it signals a bit more loss. But however stubborn or determined to continue trying to walk, at some point have to accept that the risk outweighs the ability to continue trying.

    Each progression is a sad day!! And a fresh level of upset and possibly another crisis. But then a new normal is established until the next progression. xxxx

    Leave a comment:


  • Ellie
    replied
    Hils0912 You're right Hilary: it is awfully scary looking to the future but to some degree, 'somebody' needs to have half an eye open to see what's around the corner, so as not to be caught short 😬

    With any luck, that 'somebody' is the MND Nurse, his OT or maybe GP - time will tell. xx

    Leave a comment:


  • Hils0912
    replied
    Thank you for your kind words.

    I am hoping for a better night. I have made him sit with his personal alarm on all day and every time he moves I am on my guard just waiting for his legs to buckle again. He did admit that his legs are worse now than they were a couple of weeks ago. He is getting frustrated as well as his head keeps saying you can do it, but his body is saying not a chance!.

    We have had some tears today as his youngest niece came round and he broke the news to her, but he wanted to tell her and not let her hear it from someone else.

    Hilary xxx

    Leave a comment:


  • Hope
    replied
    Hils0912 I am sorry you find yourself here but welcome. This is a good place for help and support. The first few months after diagnosis are awful. It is a lot to take in but things do settle after a while. As Heather R says, I too convinced myself I would have certain symptoms by now. There is no predictability with MND but I do think it is important to be aware of what may happen.

    xx

    Leave a comment:


  • Heather R
    replied
    Hils0912 welcome, and just sorry you’ve had such an awful first night with him home, you must be tired. Yes there’s so much to read about and learn, but I know I convinced myself at diagnosis that I was going to get certain symptoms which I still haven’t got 2years on, and may never get. So although some ahead planning may be needed, one step at a time I think is good advice, and enough to cope with anyway. MND is so unpredictable. So all the best, and take care of yourself as much as you can, and let us know how you’re going on . 🤞xx

    Leave a comment:


  • Hils0912
    replied
    Good morning,

    Sorry for not replying sooner.

    Husband was discharged from hospital last night. We spent some quality time together, I went up to bed (he has a bed downstairs now so I left him to get settled). The next thing I know I hear him shouting me. He had tried to walk to his commode and on his way back his legs had given out so he was propped up with his chin on the zimmer frame. I managed to stop him falling while he pressed for Careline who luckily were just round the corner. Finally got him settled about 1.00am and I am wide awake by this time. So it's been a great start having him home.

    I think I have read too much (if there is such a thing) and scared myself as to what there is to come, instead of taking it one day at a time. Husband has always been so laid back that the doctors and nurses kept having to check that he was ok. As he said to them, we had come to this conclusion a while ago, so had done the tears/anger etc at that point, but still remained hopeful that it could be something else.

    He currently has a manual wheel chair, but while he was in hospital they did say he needed a power chair and he had a call from the provider who are coming out next Friday to sort that out for him.

    Husband was never active, unless you can class shooting your mouth off, jumping to conclusions and running round in circles to that mix, but he always liked to go supermarket shopping (I know strange)! and it took me until earlier this year to talk him into doing the shopping online.

    Thanks for listening to my moans

    Hilary xx



    Leave a comment:


  • Claireflo
    replied
    Sorry to hear about your husbands condition and diagnosis, it's a really difficult time. Hopefully support will be available following diagnosis, it's good that he has a respiratory appointment

    I hope the council can help quickly regarding the ramp, is he in a manual or power chair? My dad (who was diagnosed may 2021 with bulbar onset) was a very active person (boxing, table tennis, running, cycling etc) is now limited in terms of activity although still mobile. I struggle with him being limited to the house and his garden as he's always been so active however he regularly tells me that he's OK as he's more comfortable at home. So I do think that we can be more concerned about the things we want our loved ones to still be able to do when often they have reached a place of acceptance.

    You'll find there's a lot of knowledge and experience that people are willing to share along with support and some banter along the way.

    Leave a comment:

Working...
X