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    Newly Diagnosed

    Hi, I was diagnosed in August 2021. I started limping in 2017 and was initially given a different diagnosis. Things have slowly deteriorated, I now use a wheelchair and my shoulders are also now involved making everyday tasks a challenge! I have suspected MND for sometime and although devastating, my diagnosis is also strangely a relief.
    I am now at the point where I need to have some home care, but although I know I need it and have had a Social Services assessment saying I qualify for help, I am finding it difficult to take the next step and accept help! This makes no logical sense, but I am stuck in a loop of not wanting help but knowing I need it. I'm sure I'm not the first person to experience this and would appreciate some help on how others have come to terms with this.
    Thanks in advance.
    Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

    #2
    Hi Tabbycat,
    I was diagnosed June 2020.I don’t have formal carers but do have my husband and sister law doing personal care with and for me .

    I hated having to ask for help to shower, then get dried and eventually dressed.
    Not a fan of being helped on and off the toilet but have no choice .Thankfully my husband and sister in law are willing to help .I get tired just trying to partially dress top half.

    My advise would be go for it especially as Social Services say you qualify for help.As MND is unpredictable you don’t want to wait until it becomes a total emergency.Maybe you could start with a morning and evening carer depending on your needs.Maintain what independence you can and then increase carer calls as needed.
    You might be able to accept the help and reserve your energy to do other things.

    Have you spoken to the OT / wheelchair services to see if there are any adaptions that can be done to your wheelchair to support your shoulders?I have found my OT has tried to find solutions as things progress along with all the palliative care team.

    Hope you can accept the help you need…Best wishes
    Mary


    Comment


      #3
      Tabbycat sorry to hear about your diagnosis & welcome to the forum
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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        #4
        Tabbycat hi, welcome to our helpful forums. I’m waiting on a social care assessment and have researched carers. It wasn’t what I wanted either but I know that my husband Steve wouldn’t cope alone so that’s why I’ve accepted this. Go for it, but choose carefully if you have any say in it. Lynne xx
        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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          #5
          A, warm welcome Tabbycat to the very best place for help, advice, support and friendship. So sorry you're here but happy to meet you. Stay Strong and one day at a time. 💪👍💐😁xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Hi Mary,
            I have had my husband help me get dressed on a couple of occasions when I've been particularly fatigued. I think you are right (I know you are right) I should accept the help now just a couple of visits a week maybe so I can get myself to adjust to this new normal. It's just getting used to the idea, I know talking about it will help me, so thank you. It's so hard to ask for help but I'm getting better at it, although my husband would probably say I have some way to go still!
            I have contacted the wheelchair services a few weeks ago about reviewing my wheelchair, I can manage indoors but anywhere outside of the home is just too difficult now, the distances or surfaces are too challenging. Hopefully I will get an appointment soon.
            Thanks again


            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

            Comment


              #7
              A warm welcome to the forum Tabby.

              Originally posted by Tabbycat View Post
              I am finding it difficult to take the next step and accept help! I'm sure I'm not the first person to experience this and would appreciate some help on how others have come to terms with this.
              1. Put on your Big Boy/Girl pants.
              2. Grimace, weep, feel like life is just soooo unfair before your first carer arrives on Day 1.
              3. Celebrate how wonderful and freeing it is to have help, not having to expend half your daily energy reserves trying to put on a T-shirt.
              4. Scold yourself ffor not taking the plunge earlier.

              Seriously though Tabbycat It is such a difficult thing to do and in no way is it to be regarded as giving in to accept help - but you know this being an ex-OT 😋 I mean, really 🤣🤣

              Take care 😘
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Tabbycat , welcome though sorry to hear about your diagnosis. You will find friendly empathetic people on here are mine of useful information.
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                Comment


                  #9
                  Originally posted by Ellie View Post
                  A warm welcome to the forum Tabby.


                  1. Put on your Big Boy/Girl pants.
                  2. Grimace, weep, feel like life is just soooo unfair before your first carer arrives on Day 1.
                  3. Celebrate how wonderful and freeing it is to have help, not having to expend half your daily energy reserves trying to put on a T-shirt.
                  4. Scold yourself ffor not taking the plunge earlier.

                  Seriously though Tabbycat It is such a difficult thing to do and in no way is it to be regarded as giving in to accept help - but you know this being an ex-OT 😋 I mean, really 🤣🤣

                  Take care 😘

                  Ellie, thank you, this is what I need to hear, your reply made me cry.....in a good way.....I'm going to put those pants on now! 🤣
                  Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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