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FSH – Will I lose more muscle strength?
Hi, I’m new to the forum, been reading your advice for months, if not years & it’s been so very helpful, thank you, but this is my first chat.
It’s a bit of a silly question, but I thought maybe someone here may know
I have FSH & my abilities are limited, but I manage with help. My nurse / OT has suggested I now get lighter crockery, cups etc. I’ve already had to admit I can no longer use a normal kettle, pans, those sort of things. So I’ve got lots of gadgets & equipment, but I’ve resisted them all the way along ( I’m a pretty bad patient lol ). My question is this, if I do get lighter crockery & daily used items, am I going to lose more muscle strength? I have this strange idea that if I continue to try & manage with my normal things, no matter how much I may struggle, I’ll be able to keep the muscle strength I have & if I give in & get lighter, I’ll lose more strength, as I won’t be pushing & exercising as much. Is this true? & do you think it’s likely? or am I so far off the mark. Unfortunately my nurses don’t have any muscular dystrophy experience.
I really appreciate any advice you may have.
Thank you & all the best
DelphiRe: FSH – Will I lose more muscle strength?Hi Delphi, its a tough one this to answer, I have LGMD and my strength has definitely wained over the years, i can no longer hold a pen to write, yet i can hold a crochet hook and crochet! Is my ability to not to be able to hold a pen down to the fact i use a mouse all the time, maybe, would this ability have gone over time anyway, possibly. The trick i have found is to exercise or use fingers hands in other ways hence the crochet. Also if it is going to make life easier then why not use the gadgets, struggling on could make you weaker because you would be tiring yourself out. How about alternating days when you do and don’t use the lighter gadgets would that help. Let us know how you get on.
Re: FSH – Will I lose more muscle strength?hi, like Vicki said also. I have trouble holding a pen and cant multi task and use knife and fork at same time but can do extra fine needle work, even bead work so I have the dexterity so why cant I consistently write in a straight line and in a clear legible manner. who knows. yet weirdly enough I don’t have any issues drawing.
I don’t think upgrading to thinner lighter china plates will harm your progress but it may make things easier. I gradually had to replace plates as they didn’t survive me long once they got too heavy.. you will know the plates too heavy when they are all chips dents and half’s
I have a pref for quality thin china mugs as I have always found thick wally mugs too heavy I was probably the only 2 year old that had a china cup. similar with glasses I like a thin tumbler like the pub half pints or the MCDonalds can shaped glasses.you will know in your self when you are ready for “stuff” I resisted for years but now am a gadget convert. adding a gadjet could mean being able to carry out a task faster, safer and for longer.
kettles have you heard of a kettle tipper? lots of different types from about £10 up. lets you keep a full size kettle.
Re: FSH – Will I lose more muscle strength?Welcome to the forum.
These two ladies are right on the point with their advice. Totally agree with it.
My hand and arm muscles are some of the worse affected so have been through some
of these steps. For years I totally ignored the Physio people’s advice but now
do everything they say.First moved to lighter China and two handled China mugs but now totally to lightweight
plastic mugs and all melamine lightweight plates and dishes. Tipper Kettle and
thick handled “adaptive” cutlery are vital and a trolley for food transfer, laundry, everything.
First used voice recognition software but now use the amazing gesture control
keyboards like ” Swype” on Touchscreen tablets. There are buttonhooks
and dressing sticks and pull on sock gadgets.Give it ask a go. It really helps.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: FSH – Will I lose more muscle strength?Hi Delphi,
I too have FSH and one of the things I find invaluable is a simple beaker with a spouted removable lid. I have it on my bedside unit at night so that if I wake up thirsty in the night I can just reach out for it and drink lying down. I was finding it too tiring to sit up for a glass of water but the beaker is lightweight, non-breakable and easy to use safely! It only cost a couple of pounds from my local mobility shop and I expect you could get one from ebay or Amazon for example. [picture attached]
I understand your concerns about losing muscle strength by using lightweight crockery and utensils etc. but as others have said, you don’t want to wear yourself out by struggling with things that are getting too difficult now.
Sybylla
Re: FSH – Will I lose more muscle strength?I use straw alot now. not out of place in soft drinks and saves me struggling to lift arm all the way up and the tilting cup struggle to drink without wearing it. even use them in tea.
when Im in hospital or having a inbed reading day I have a hydration bottle that a company sent me to demo(think it was on talkmd they asked for testers) its basically bigger sports bottle with a straw but can be used lying down as it only flows when you drink. can even put ice init.
I use normal cuttlery but use a super sharp serrated stake knife on everything.
Re: FSH – Will I lose more muscle strength?Hi there – another FSH-er here
Thank you for your kind words about the forum, it is lovely to know we have been helpful and welcome to posting
It took me a very long time to accept that regardless what I do or do not do my strength will deteriorate, that is the nature of the beast … the trick is to maintain that fine balance between keep on trying to manage as long as possible and try too hard and cause damage.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: FSH – Will I lose more muscle strength?Hi everyone,
Thank you so much for all your tips & suggestions, I do appreciate them, sillily I hadn’t realised until reading your posts, that I haven’t used a proper drinking Glass in years, I just transitioned into using the children’s plastic breakers without realising. Silly I know.
I love the spouted breaker idea for night-time, that’s on my shopping list, as is the hydration bottle, what a good idea.
I have also just added a Breville Hot Cup to my kitchen, the smaller one, thankfully its quite stylish & it doesn’t look clinical, so I can pretend a bit long, but there’s no more dodge pouring boiling water for me, just pop a cup under the sprout & press a button & boiling water dispenses straight into the cup. Brilliant. I think I’ve drank more in the last weekend than I have in a long time.
I guess like everyone, it’s finding that fine line & learning not to fight with myself so much. I’m still trying to stay in that pretend stage, that everything fine & the equipments ( bath-lifts, toilet frames, trolleys etc ) keeps encroaching in on my life.
I do think a little fine china, sounds both practical & pretty, so that could work for me & the melamine for my slippy days, when everything ends up on the floor, sounds prefect.
My district nurse has suggested checking out the new Gtech AirRam vacuum, she says it’s been recommended as its very lightweight & practical & it’s not like I can drag my dyson around any longer. I think anything that gives me a little more independence for a little longer sounds good, so I’ll let you know how that goes. But I have to say FSH has certainly change my view of the world, people take so much for granted & don’t realise how rewarding it would be just to be able to hang out my washing. Oh well! It could be worse, thank you for all your positivity. I will try & hold on to that & I look forward to reading more of your posts. It is so hopeful. Thank you & take care. DelphiRe: FSH – Will I lose more muscle strength?@delphi wrote:
But I have to say FSH has certainly change my view of the world, people take so much for granted & don’t realise how rewarding it would be just to be able to hang out my washing. Oh well! It could be worse, thank you for all your positivity. I will try & hold on to that & I look forward to reading more of your posts. It is so hopeful. Thank you & take care. Delphi
Oh I hear that – there are times I would kill just to be able to step outside my own front door and enjoy the sun on my face without it becoming a three man expedition!!
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: FSH – Will I lose more muscle strength?Hi Delphi,
I’m so glad you’ve found some of our ideas useful. That’s the great thing about the forum – we all help each other and it’s a great place to come with questions as there’s always someone who can help. I think we can all identify with your thoughts that it would be so nice to do things that other people take for granted. But as you say, it could be worse!
Keep reading the posts!
best wishes,
SybyllaRe: FSH – Will I lose more muscle strength?another thingy I have is neaprine can. bottle and mug cozys. keeps the contents either hot or cold longer without chilly or burnt fingers. means no more cold tea. the can and bottle ones are everywhere. mine came off ebay and a beer promo.
my mug one however got kidnapped at work and have as yet been unable to replace. it came in a gift box when I left a prev job. was insulted at the time when I received it but it was very hand particularity (not probably recommended) when carry hot tea while driving in power chair. I could rest mug on knee without getting pretty red ring mark on leg.
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