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IBM physical difficulties
Hello, I’ve just joined this forum. I have IBM and I now find it very difficult to get up from chairs as they’re nearly all the same sort of height. I’m reluctant to leave home in case I can’t sit down wherever I go. Does anyone know of a good product I can take out with me which is comfortable, safe and not prohibitively expensive please? I would also like to use such a product at home so that I can sit at the dining table, at my desk, at the garden table etc. etc. I expect there are some people on this forum who have IBM and share similar problems? It would be great to share ideas etc. please? Thank you.
Reply To: IBM physical difficultiesHello and welcome Bo Bo. I am glad you have found us. My first suggestion would be that you should contact the local Occupational Therapists as they are the best people to advise on these matters, and may eve be able to help find funding to buy the necessary equipment. I might also suggest one of the wheeled frames that not only help you walk but also have a built in seat. They can be used outside and inside too. But I would re emphasise, that as it appears your condition is changing, a proper assessment by the OT people would be the most sensible way to go. You do not need a GP referral, but your GP may well have their telephone number for you to contact them directly.
Mike
So many love songs, so little love.
Reply To: IBM physical difficultiesHello Mike, thank you so much for getting back to me. I have just become ‘plugged into’ an OT who is helping me with some issues. But my most awkward problem is that normal height seats are now virtually impossible for me to get up from. The OT is getting me a walker which is brilliant as I am becoming more prone to falling but it will not have a seat because, of course, I cannot get up from it. Inclusion Body Myositis weakens the quadriceps so much that they cannot lock the knees and my legs can completely give way. If I fall now, I cannot get up from the ground without a complete lift by someone and seat heights are needing to be higher and higher. I have raised my settee by 9 inches hope to get a rise recliner armchair soon. There are a couple of portable seat risers on the market but I don’t think they rise high enough for me to get up from. It is unfortunate that the OT does not have the magic answer as of yet. I’m wondering if other people with this particular problem, know what to do – maybe others with IBM. Thank you again for your help, it was very kind of you to write to me.
Reply To: IBM physical difficultiesllo . I hear everything you say about IBM.I have just found how to get involved having been misdiagnosed for 6 years with Fibromyalgia.Now I am having the same difficulty getting up from a chair and if I fall find it alomost laughably ridiculous getting up.Only a fortnoght ago , fell and broke my fibula so have a BIG BLACK BOOT which will see me through to Christmas! Richard J
Reply To: IBM physical difficultiesHi Bo Bo,
I too have IBM and know how difficult it is getting up from chairs as my sit to stand is so badly affected. I know chairs are so low and it poses such a problem. So I have a booster car seat from Amazon and two wedge cushions from my local mobility shop and I have a large bag that I put them in and I can carry them hooked onto my walker handlebars. They are quite light and are easy to carry on my walker and they don’t squash down, so are a huge help! I find it essential to have non-slip matting which can be cut to size and I place that under and on top of each cushion and this does help and stops them slipping. I always look for chairs at appointments that have arms so that I can try and lever myself up from as like you, I can very easily fall. I often still have to ask for help and find that people are very helpful if they see me struggling to get up from a chair.
I do hope this helps and don’t feel alone, I have exactly the same problem and everytime I look at seats, I wonder why they are generally so low! And so difficult for us with IBM!
Take care and let me know if I can help any more, Alexandra.Reply To: IBM physical difficultiesHi Richard,
Sorry for my late reply and to hear of your difficulties.I hope you are recovering by now.
Thank you writing to me.
Bo BoReply To: IBM physical difficultiesHi Alexandra,
sorry to hear you also have IBM.
Yes, I look at various seating and wonder how I was ever able to use such low seats! I feel as though I have stepped (with difficulty!) into a different world!
It sounds to me like you have found a good way of coping with our problem. Would you be kind enough to give me more information as to the actual product names of the things you use, in the hope that I can get very similar stuff to you? I had assumed that such things would be heavy and would squash down too much. So you’ve clearly found the right things.
Thank you so much for your kind words and sharing and helping. I am so grateful.
Bo Bo.Reply To: IBM physical difficultiesHI BOBO,
THANKS FOR YOUR EMAIL AND GLAD YOU FOUND MY SUGGESTIONS HELPFUL – THE BOOSTER CUSHION FROM AMAZON IS CALLED MEDIPAQ AND THE WEDGE CUSHIONS DON’T HAVE A BRAND BUT THEY WERE FROM MY MOBILITY SHOP. THEY ARE SQUARE AND VELOUR AND ARE SLOPED IN SHAPE, IF YOU LOOK ON AMAZON THEY MAY HAVE THEM, THEY ARE VERY LIGHT AND PORTABLE SO HAVE A LOOK AS THEY MAY HELP YOU.
TALE CARE. ALEXANDRA.
Reply To: IBM physical difficultiesPS! BO BO, THE GRIPPY MAT IS FROM AMAZON TOO AND COMES IN A ROLL, SO YOU CAN CUT IT TO SIZE FOR UNDER AND ON TOP OF THE CUSHIONS! I KNOW HOW YOU FEEL, SEATS ARE A REAL PROBLEM FOR US AS GETTING UP IS SO, SO, SO DIFFICULT FOR US ISN’T IT!!!
Reply To: IBM physical difficultiesHi Alexandra,
Thank you so much for all this help. I will now be able to start getting some of these things and should then be able to cope with some seating for a while longer which is a precious thing! Just one question – do you use the wedge shaped cushions because you find deeper, non-wedged cushions squash down too much? It looks like some of the latter can also be prohibitively expensive. Thanks again. Bo Bo.Reply To: IBM physical difficultiesHi Bo Bo,
Thats my pleasure, its such a problem and know exactly what you mean about seating, its such a problem away from home. I use the wedge cushions together with the booster seat as they are light to carry around on my tri-walker which can tip over with too much weight and also they are velour so don’t slip easily. When I use two together, I use the opposite ends meeting so they effectively make a square cushion shape, but give you flexibility if you only need to use one if you don’t need the two.
Let me know how you get on!
Take care, Alexandra.Reply To: IBM physical difficultiesThank you Alexandra. I really appreciate all your kindness and help.
I’ve very recently and at last, had the help of an OT. But, after discussing my difficulties with her, she said that she is a rehab OT and is about to refer me to a more long term OT. So, hopefully, I might find I’m speaking with someone as helpful as you! But there’s nothing like talking to someone who is, unfortunately, experiencing the same problems and how to overcome them.
Yes, I will let you know how I get on.
Clare
Reply To: IBM physical difficultiesHI CLARE,
I’M SO GLAD YOU MAY HAVE ADVICE FROM O/T AND YES, ITS GOOD TO TALK ABOUT OUR IBM ISSUES AS THEY ARE SO SIMILAR FOR US AND SO TO SHARE THEM IS SO HELPFUL AND WE’RE BOTH FINDING THE SAME THINGS DIFFICULT. I KNOW JUST HOW YOU FEEL.
LET’S KEEP IN TOUCH AND I HOPE YOU HAVE A HAPPY CHRISTMAS, DO STAY SAFE AND WELL AND LET’S BOTH TRY AND STAY ‘VERTICAL’! THAT’S MY DAILY MISSION – NOT TO FALL OVER.
TAKE CARE OF YOURSELF,
XMAS WISHES, ALEXANDRA.Reply To: IBM physical difficultiesHi Alexandra
Oh wonderful! I love your sense of humour!
Yes, it would be lovely to keep in touch.
Wishing you a Happy Christmas and best wishes for a happy and healthy new year. Stay safe.
Seasons greetings from me, your friend, who is also trying to stay vertical.
Clare
Reply To: IBM physical difficultiesHI CLARE,
THANK YOU FOR YOUR LOVELY MESSAGE AND I HOPE YOU HAD A LOVELY XMAS TOO!
I KNEW YOU’D UNDERSTAND AND GOING THROUGH THIS TOGETHER GIVES US A BIT OF EXTRA STRENGTH EVERY DAY!
I’M SURE WE COULD CHAT FOR AGES ABOUT OUR IBM AND IF YOU EVER DO WANT TO HAVE A CHAT, I AM HAPPY TO GIVE YOU MY NUMBER.ANYWAY, DO TAKE CARE AND SEND LOTS OF STRENGTH AND HUGS FOR THE NEW YEAR,
BEST WISHES, ALEXANDRA
Reply To: IBM physical difficultiesIt would be lovely to chat with you Alexandra, perhaps once I’ve attended a couple of appointments that are not far away now. I moved house this year and I’m getting ‘plugged’ into OT’s and new neuromuscular services etc.
I’m thinking that meanwhile maybe we could share email addresses so as to be a bit more private?
Thanks, Clare
Reply To: IBM physical difficultiesHi Clare,
Oh gosh yes, moving is so stressful!! Of course, Its so important to get support in place and help for you in your new home.
When you want yes, let’s exchange email addresses and we can keep in touch!In the meantime, do take care and I wish you a really healthy and happy 2022 and its so nice we have got each other to chat too about our IBM!
Stay safe and catch up again soon, soon, soon!!!
Alexandra. Reply To: IBM physical difficultiesVijay from India. Age 36. Having Limb-Girdle Muscular Dystrophy and wheelchair dependent
I am working and need to earn more to pay for my medical support and home care taker. I have aged father who has same LGMD and aged mother to take care with. If any one could help me to get online/work_from_home kind of jobs from your country could be highly appreciated.
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