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Feeling alone with my diagnosis

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  • Deborah
    replied
    Hi Helen, my mum was diagnosed 18 months ago. We got a second hand powerchair quite early on and it was great for getting out in the fresh air (it could be folded and popped in to the car). A few months ago she also received an amazing powerchair from the wheelchair service. It took about 10 weeks to arrive. My mum never wanted to use it so it has sat happily in the dining room but is there if she ever fancies a spin! We used the manual one instead.

    I agree about focusing on the positives. For my mum, it was her evening bath. It was a job to convince the OT that it would work but we avoided converting the bathroom into a wet room and instead they approved a ceiling track hoist. My mum has been able to have a hot bath every night and this has really kept her spirits up 🥰

    shelly21 really fab advice - lovely to meet you.

    Best wishes, Deborah

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  • Ellie
    replied
    Originally posted by shelly21 View Post
    I think im a control freak.
    shelly21 Meet your sister 😍 except I don't think I'm a control freak, I know I am 😏 Still, it has served me well. xx

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  • shelly21
    replied
    Mary c i also am a list writer doer lol.
    thank you for the warm welcome all.

    I think im a control freak. I need to be in control when loosing control if that makes sense.

    Helen sorry if i have hijacked your post. Maybe use the forum advanced search if you want to find topics etc. That really helped me.

    🤩

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  • Mary C
    replied
    Hi Shelley21,
    I did similar things to yourself after diagnosis as it helped me accept the MND and felt like I was social working myself(I worked in Social work pre diagnosis)
    I love lists ...so some satisfaction in ticking things off when completed.Look forward to more posts from you
    Best wishes
    Mary

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  • John D
    replied
    I know this might not be possible for everybody but after initial hesitation to join in I found the monthly local MNDA branch Zoom support group call helpful. Although I have lost my voice, the Chat function on Zoom works well. Partly through that I meet up in person monthly with 3 others nearby who have also lost their voice, to support each other and share experience. We email in the meantime. Also, there are 2 other people in my immediate area who have different forms of MND who I see with another member of the group of 4 at the request of our palliative consultant.

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  • LindaB
    replied
    shelly21 welcome and thanks for the useful tips....glad you've started posting and hope to hear more from you. Lovin' your upbeat attitude👍

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  • PeterPan
    replied
    shelly21 Great advice. If you’re able to treat this thing as a project with milestones to meet, you can get satisfaction from your achievements and it really does help you to feel more positive.

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  • matthew55
    replied
    Got to say shelly21 you are a welcome breath of fresh air here. 👍🤗😘😍xx

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  • shelly21
    replied
    hi Helen

    I was diagnosed four months ago but like many i was already guessing what it was some months prior. This is my first reply on this fab forum. Its taken me four months to finally get involved. i can only give a few tips. firstly allow time for grief but maybe just start implementing small things. for me however sad i was i still forced myself to enjoy a bath. i would had nice oils, buy fresh flowers and listen to bit of music. i googled alot. i have a very pro active approach in life so for me i had to make changes based on advise i read here. firstly the amount of appointments in the first 2 months is staggering. blood tests, meeting all the different therapist etc. start a note pad. list all the contact info. write down what each person said so you can re read in the future.

    like we all know you have to try and prepare for the way your body and abilities change. i brought second hand things nd new. on ebay i got a fab electric wheelchair for 500 instead of the 2800 it would have cost new. but a warning get advice as well you can end up buying things that wont get used.

    the occupational therapist was my saviour. i got an air cushion which helps re my muscle wasting bum lol. i also had a shower chair, air mattress topper, tiolet grab rail and a few more helpful things. you have to nag some departments but try first.

    what i am saying is try and take charge of it like you are project managing. four months in and yes its been exhausting and down right pants but i am getting there. please chase pip benefits as any income is great.

    sorry if i have waffled but just trying to add a few more tips. please use this forum as its been invaluable to me. also phone mnd connect if you are struggling. they are a great help.
    Last edited by shelly21; 16 September 2021, 23:06.

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  • PeterPan
    replied
    Hi Helen, fully understand the feeling of loneliness but you won’t be alone on this forum.

    It’s entirely normal to feel devastated, angry and in denial about your diagnosis. After that you will gradually begin to accept the situation and you’ll be able to turn a negative perspective into positive thoughts, and then move on. You can’t hurry up the process, but acceptance is a good place to arrive at.

    My advice would be to get a power wheelchair as soon as you can. One of my MND symptoms is extreme tiredness and the wheelchair is great for preventing absolute exhaustion. I can still get around, but it’s much quicker in the power chair and it means we can still go for ‘walks’. It’s also quite fun to learn how to control it before it becomes a vital requirement. The assessment time and delivery time for power wheelchairs can be quite long (depending on where you live) so that’s another reason to get the ball rolling when you feel up to it. There’ll be other issues though like how you get the chair into your home and how you transport it, but take one step at a time when you feel up to it. Best wishes.

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  • Mary C
    replied
    Hi Helen,Sorry about your diagnosis and you can feel alone with MND but this forum is a good place for advise and support.
    I hope you are linked to a hospice palliative care team or a community palliative care team?
    In terms of getting a wheelchair my OT referred me to wheelchair service for a manual wheelchair and then a powered chair.
    My house doesn’t have large rooms so using the powered chair indoors is awkward.
    I use it in the garden and for some trips outdoors.To get the powered chair took 6 months but the manual chair arrived fairly quickly once the OT made the referral.

    I also go on zoom meetings for local MND association support group along with zoom counselling sessions arranged by the palliative care team.I find both of these useful but particularly the counselling to verbalise any concerns.

    Like you losing independence was a dread but seemed inevitable.It didn’t happen overnight and like others I have learned to adapt .I don’t know what support you have already but this isn’t an easy journey so for people living alone carers become essential.

    When my diagnosis was new I decided to get cracking on things I could do in terms of preparing .For example I sorted benefits, I already had lasting power of attorney in place.I organised a lifeline and started to think about voice banking.

    I looked at my housing situation and researched changes I might need like a wet room, through floor lift, wash and dry toilet systems etc.Also I asked the OT for advise about potential changes.

    I made a list of health professionals contact details to share with my husband etc. For me these tasks helped me feel at least I was doing something positive.

    I really hope Helen that you have friends and family support as well as health professionals you can ask for advise.
    Please ask on here as whatever the question usually there will be someone on here who will reply.

    Feeing alone is normal Helen as it’s such a shock and changes our plans but as you will read on here we still try and enjoy each day allowing for some low times too.

    Best wishes to you Helen

    Mary x




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  • Deb
    replied
    Hi Helen and a warm welcome to the forum. I am so sorry for your diagnosis.

    The early days are so scary and the advice can be overwhelming. Its very difficult to accept and it helps if you can take one day at a time whilst you come to terms with things. However, sometimes that's not possible as home adaptations and equipment take time and its best to have them before they become a necessity.

    People progress at different rates and in different ways but for me it was my legs affected. Like Ellie I found i had more independence in an electric wheelchair with my hands free than trying to walk holding onto things.Hopefully you are getting support from an MND team with practical issues and counselling, if that's what you want.

    Take Care,
    Love Debbie x

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  • Sarahw
    replied
    Hi Helen and welcome. we all know how tough it is at the beginning and how each new symptom seems like a Hugh obstacle. With regards to a wheelchair i would say get one now before you have a fall or are stuck. My daughter (23) sailed round the house when my first wheelchair arrived! She made the dreaded arrival fun! I’m more accepting of each new piece of equipment I need now. I would also say get in touch with your wheelchair service as soon as possible due to waiting times. Keep in touch. X

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  • matthew55
    replied
    Hello Helen. I know how lonely this can feel but since joining this forum I haven't been alone again. Stay Strong 👍🤗😀😚xx

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  • Lynne K
    replied
    Hi Helen and welcome here where you’ll get support and friendship. It is hard at this beginning but most of us take each day as it comes.

    I have a lightweight wheelchair and a powered wheelchair but still just about wobble around with a four wheeled walker at home. This won’t be for much longer as it’s really difficult. But nearly four years since diagnosed I can’t complain I guess.

    I hope that you’ve got a good support network around you. Take care, Lynne x

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