In New York

In New York

Thursday, 3 February 2011

Strolling and rolling

He's been off work for the past few days. Something is changing, he tells me. Last week, he fell twice. On both occasions, he fell backwards. The first time was at home, outside the back door, but the second time he fell backwards on his way into a pub (yes, you read that right - on his way 'into' the pub). Happily, he was with friends. His bottom, back and head hit the pavement but although he was very shaken and a bit bruised, there were no serious physical consequences. It worries me that he may fall again - he's shaky on his legs, standing still is very difficult. He fell even though he was using both sticks.

He says that since the second fall, he feels as if he is entering a transition period. Something is changing in his body and psychologically, he has to adust. He's not sure if the strength he has lost will return for a time, as it has before. That he is losing strength in his legs is certain. He is also losing confidence. He didn't go out much over the weekend. The other night in bed, he turned to me in the darkness and said 'I'm afraid to go out.'

He is battling against the wheelchair. He has a point. 'If you don't use it, you lose it,' he says. But safety is important and if he 'uses it', falls and injures himself, he might never stand up again after he recovers. So where do we go from here?

I don't want to nag him into using the wheelchair - God knows, I don't want to rush him into it. Everyone says he has to come to it himself. Yes, but he's so stubborn and let's face it, he's not always right.

So - it was a gorgeous day today and I suggested a walk down to the High Street. I need to get used to pushing the chair and there is no way around it. He will need to get used to this. So we did it. Our neighbour, Christian, came with us. There's a lot to think about when you're pushing the chair. I tried not to go too slowly or too fast. I never realised the pavements were so uneven and bumpy! You have to watch for low branches sticking out from hedges. I found it a challenge when the pavement sloped on one side or the other. I think I did okay. I was lucky - Christian was the one pushing when Roch was smoking a cigar so he got the smoke blowing back in his face!

How did Roch feel? It's losing his independence, losing his power. He says he feels diminished as a person. He knows this isn't so but he can't help feeling like this. I feel for him. But it will give us more freedom to do things together. For instance, we can go back to Kew now. He can't walk round himself anymore. He used to love Kew. Maybe it would be too sad for him to go back to Kew. I know it won't be the same, and I can't hope to understand the depth of his sense of loss, but it's not over yet. He's right, we are entering a different phase, a significant phase. I know it's different for him. But for me, it's not the worst thing I'll have to face.

I'm proud of us today.


  1. I am sure Roch knows what is best for him but this is my experience for what its worth. Yes you do lose functionality a little quicker if you don't use it. When I switched to using a standing hoist to transfer to the loo, I was still just about able to, by holding on to the sink and shuffling my feet, transfer without it. After using the hoist for a couple of weeks, I reckon the shuffle option had gone, whereas having continued shuffling I may have had another 4 or 6 weeks. But I will have had all the extra stress involved in both anticipating and doing the transfer, and I would still have the psychological impact of using the hoist in the end. I think it is more depressing continuing to be reminded that you can't do something than being able to achieve it albeit through another method. Start looking at power chair options now, they can take 8 weeks plus to get. If funds and space permit get a free indoor wheelchair from wheelchair services and an outdoor wheelchair privately. Particularly if you are progressing relatively slowly you could get years of use from it. I bought my offroad wheelchair in 2008 and it is only now getting difficult to operate. OK It cost £11k but it transformed my independence and quality of life. It has taken me places an indoor chair couldn't get near to. I can't recommend it highly enough. Don't struggle with sticks and walker and become a prisoner because of fear of falling or exhaustion. Get some wheels and take charge again!

  2. I agree with Steve. I finally succumbed to using the walker when out after tripping up numerous times using the sticks and hurting myself. Then, whilst staggering around indoors carrying plates, I tripped and fractured my femur; it is just not worth the risk when the consequences could be dire.
    I had the same chair as Steve, it was brilliant (sold due to neck problems and inability to get it into my car). You can get quite good power chair bargains on e Bay if you opt to buy your own. Read my blog (COPING WITH MND) re my latest experience with wheelchair services!

  3. I am a carer and wife of an MND sufferer. You are explaining exactly how I used and still do feel and Roch has exactly the same problems in exactly the same way as my husband deteriorated, although a year behind. My husband did not want to have a wheelchair until he really couldn't walk and I don't blame him. Get him a scooter instead. We used to go for a coffee to the village, go to the golf club for a pint or to the local pub regularly.They only have to walk a few paces to the bar and they have great fun turning the speed up so you have to jog to keep up. It for me and him was a great way of loosing weight and gave him independance without the "disabled" badge.We have one in the garage if you want to give it a try. Wheelchair services told me that they were not an "emergency" service when he eventually needed one -after 2 months waiting after ordering, so would agree with Steve and Pauline to keep this in mind. Get "An Elk" from the OT to help you pick Roch up and learn to walk 2 paces behind, I did!Steve knows me if you need me. Julie

  4. Hi Deirdre,
    It's me, "Larek" from Venice and California.
    Please email me so that I may get your address in UK, as I have something I would like to put in the post for YOU. Hope all is well.

    lerickat [followed by the at symbol]
    Say Hi to Roch. Arsenal forever.

  5. Hey guys thanks for all your really, really helpful comments. So delighted to get such great feedback - ! Larek!! What a brilliant surprise.

  6. Deirdre
    I note that you live in the Richmond/Kingston area.There are 8 of us (MNDers +carers) who are all friends; if you would like to meet at any time just let me know. We meet fairly regularly. We are 1x PLS, 1x PMA (that's me) and 2x ALS.