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  1. #111
    Forum Member Terry's Avatar
    Join Date
    May 2012
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    UK
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    7,929
    Hi PT,

    Do give this a try if you haven't already done so.

    Love Terry

    https://youtu.be/qVnbTMMSYI8

  2. #112
    Forum Member
    Join Date
    Feb 2019
    Posts
    243
    I think these relaxation videos are very good. You can get some good sound ones , like wind, birds, chimes etc .
    Sheila x

  3. #113
    Forum Member
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    May 2019
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    71
    Thank you all. I may have said it before but my main way of dealing with anxiety has been trying to be active. But my ability to be active is being ruined by this condition. Just being stuck in the house all day every day is becoming awful. I have had a specialist company take me out in a wheelchair/ car and I will use them again but, that is very different to driving myself. Things like driving and walking are examples of being active. My last job could be stressful and I often awoke feeling depressed and anxious about going to work. But then when I arrived in work I felt a lot better because the activity and concentration of driving to work for about half an hour helped counteract my anxiety and depression. Not everything makes me anxious;- for example I can remember one job I had where I was lucky to be about 30 seconds in front of an accident that could have killed me! Yes it did make me more anxious and cautious for a while being in work but, not to the extent of going off sick from work. I think the main cause of my anxiety is things I can't control or are difficult to control. So MND is a terrifying condition for me. Whenever I try to be positive and counter it, it always eventually kicks back with things like my falls. And now I am struggling to do basic independent things like getting dressed. For example I have adrenalin building up in my chest when I struggle to get my legs in my trousers. I am terrified of becoming more disabled and losing my independence and ability to be active.

  4. #114
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    692
    We do understand, Panniertank.

    I used to really enjoy driving and the independence it gave me. I had to let my beloved Alfa Romeo go when I needed hand controls, which really upset me. I bought a new car and had hand controls fItted. It had only done 700 miles (which included a trip to Scotland ) when I had to sell it so, believe me, I really do understand.

    You need to find a way of coping with having MND, which is one of the reasons why it is so important to have some sort of psychological support. Do please make use of any such services that you are offered
    Dina

    Trying to keep positive, but not always managing.

  5. #115
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    940
    Me too Panniertank, I really miss driving and doing my last job as a driving instructor. As Dina says about keep using the service to get you out from your own four walls. I get fed up staying in too despite having a husband who takes me out sometimes. 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.

  6. #116
    Forum Member
    Join Date
    May 2019
    Posts
    71
    Thank you Gillette and Lynne. I am so sorry you can't drive anymore when you enjoyed it so much.

  7. #117
    Forum Member
    Join Date
    May 2018
    Posts
    439
    Hi Panniertank,

    I am sorry you are so anxious and panicky, especially in the night. Things always seem the darkest when we cant sleep and it takes a while to get the dose of any meds right for you.

    I totally understand how heartbreaking it is to give up something you love permanently and it must be doubly hard if you live alone. I really struggled when I had to give up driving, a job I loved and my independence. I am lucky to have alot of support from family and close friends but it is hard to have to rely on other people.

    I totally understand that it's easier said than done but I try to focus on what I can do and what I enjoy still , like reading and music and I try not to look too far ahead. Noone in life knows what tomorrow will bring.

    I hope you are getting the professional help you deserve with practical solutions in the house and also the emotional support to come to terms with things.

    Look after and be kind to yourself,
    Love Debbie x

  8. #118
    Forum Member
    Join Date
    May 2019
    Posts
    71
    Thank you Debbie,
    You are right, it is good to try to focus on what you can still do and enjoy. I am glad you like music and reading. I used to as well, especially live music but something has happened to my mind and my ability to concentrate. I struggle to read and watch tv programmes or listen to music.
    In my area there is a specialist MND clinic and it has been very helpful, especially my OT, physio and social worker who have arranged lots of things in my house like extra handlebars on my staircase and front door, a riser recliner chair ( paid for by MNDa, very kind ) provision of walking frames etc. So, I have a lot of practical help ( and from the local MNDa staff/ volunteers as well) but not much emotional support . But my palliative care doctor has told me about a course they run , one day a week for 12 weeks which can help with things like anxiety. So I think I will apply to go on that.
    I went to my ( 3 monthly ) MND clinic today. I was taken in a wheelchair and ambulance ( I am fortunate in my area there is a non emergency ambulance service ). I can' t believe how much I have changed in just 3months because at my last appointment there I drove myself there and walked from and to my car just using one crutch. And 2 years ago I did a number of walks in the countryside near the town where the hospital is located, often up and down long, steep hills!!
    My neurologist thinks my MND has been progressing slowly and observations by my OT also suggest that my balance and ability to walk is being exacerbated by my anxiety.

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