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Feeling alone with my diagnosis

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    Feeling alone with my diagnosis

    Hi I’m new to this. Struggling to accept my fate and afraid of been totally dependent on people. Can anyone advise how they coped with diagnosis and when you decided to get a wheelchair

    #2
    Hi Helenhigginschester and welcome to the forum. So sorry for your diagnosis but glad you're here where you will find lots of support.
    Coping with diagnosis for me personally I couldn't eat couldn't sleep...especially in between the initially diagnosis and then 2nd opinion. I did briefly ponder a quick exit...but as the strongest drug in my flat was paracetamol didn't have the means. Strangely once I had confirmation I thought well I am where I am...terrified but no choice other than 'roll with the punches'.
    I've reached the point I need a wheelchair because if I don't I'll be stuck indoors...walking any distance has become too difficult. So need to speak to the Neuro team OT.
    I hope you're getting all the right support and referrals. I'm a believer in counselling but that again is a choice.
    Just take a day at a time....you'll get lots of great support on here 👍😘
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      Helenhigginschester A warm welcome to the forum Helen, you're not alone now you found us.

      It's completely natural to struggle with the eart shattering news of the diagnosis and nobody understands that more than us... I found counselling very beneficial and I would not have thought myself the counselling 'type', but needs must...

      I started using a wheelchair when my walking was that slow and, even with a frame and using the furniture or walls for support, I felt unsafe tottering around the house, never mind outdoors. And what freedom my powerchair gave me, zipping around the place. Ironically, I had more independence in a wheelchair than I had on my own two feet.

      We have an informal Book Club Helen and do quizes from time to time, and we have a laugh too, all of which you are most welcome to join.

      Love Ellie.
      Last edited by Ellie; 13 September 2021, 21:22.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Hello Helen and welcome
        You are not alone we have all been where you are, and these first few months are quite daunting you will get through it.
        We are all different so there is no single solution to coping, but you will work it out, with support from family and friends and even amongst the members on here.
        for me, because I’m slow progression, after a couple of weeks of moping around followed by a mad panic trying to make plans for every eventuality, I ended up largely ignoring it and enjoying the things I liked todo. Accepted that it is what it is and no amount of worry is going to change the outcome
        im still mobile, just about, so wheelchairs are not on my radar yet, although I have looked at single seater golf buggy 😄 (wife said no though.)
        S.
        As long as there’s golf and beer I’m happy

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          #5
          Hello Helenhigginschester - welcome our exclusive club. People say it doesn't feel bad once you accept it. I don't know. But we understand how you feel, because we're there with you, each hanging on to each other. xx

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            #6
            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
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

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              #7
              Hello Helen. I know how lonely this can feel but since joining this forum I haven't been alone again. Stay Strong 👍🤗😀😚xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #8
                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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                  #9
                  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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                    #10
                    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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                      #11
                      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.
                      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                        #12
                        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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                          #13
                          Got to say shelly21 you are a welcome breath of fresh air here. 👍🤗😘😍xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                            #14
                            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.
                            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                              #15
                              shelly21 welcome and thanks for the useful tips....glad you've started posting and hope to hear more from you. Lovin' your upbeat attitude👍
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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