About two months ago I bought a weighted vest and it seems to have really helped me, if anybody else is thinking about trying one I would be more than happy to share my experiences.
Hi, could you Plse explain what an OY vest is and how it can help.
Hi Lola, the OT vest is a weighted vest that was originally designed for children with learning difficulties, it has been around for a while and for some children can provide an alternative to medication. I have SCA 1 and have had it for 10 years. On the website they have testimonials from other people with SCA 1 and physiotherapists that claim that the vest has helped them. I have had my vest for about two months and was pretty sceptical that something so simple could help me. At christmas I was pretty low and not doing all my exercises or generally making much effort. Over the last few weeks I have noticed a real difference, my fine motor skills have become so much better, I can do zips without help and I don't fumble when I put my card in the cash machine. These may sound like silly things but to me it's just another loss of my independance. My posture is better and that has mean't my gait is better and when everything isn't such a struggle I just feel so much more confident.
If you fancy a look at the website it's
If you have any more questions please message me.
Thank you Brommie for your reply. My hubby Peter has SCA 6 and he useS a walker.
I will check out the website.
here is a clip from the American Journal of Occupational Therapy that explains the vest and where it came from.
The amount of weight used in the OTvest is based upon the research published in The American Journal of Occupational Therapy, and in Pediatric Issues in Occupational Therapy: A Compendium of Leading Scholarship by Nancy VandenBerg, MS, OTR. This research is based on her experience with over 150 children using the vests, in addition with collaboration with other therapists. Each wearer is unique, however, and the weighted vest should be used under the guidance or suggestion of an occupational or physical therapist, and worn under adult supervision.
Weights (lead free) are evenly distributed and quilted into a high tenacity nylon “yoke” that attaches/detaches to the inside of the well-made and stylish, 12 oz. denim vest, with hook/loop tape to remove for washing. Snap closure. The durable OTvest will last for many, many years.
It won't let me paste the picture but it is like a denim waste coat and comes in a variety of sizes weighted to the persons size/weight. The site is otvest.com.
The 'management of ataxias towards best clinical practice' has a section in physiotherapy that says there is no evidence for axial weighting in ataxia but the journal above (article is called 'weighted vests and task behaviour' and it is the Nov/Dec 2001 edition of AJOT) and work extended to addressing ataxia has been documented. There is also evidence of its success in assisting people with MS to improve their mobility. Like many things neurological, what is developed for one area can often have affects in another and this is something worth looking into further.
Thanks Cuds for taking the time to explain. Much appreciated.
Thanks for explaining (Not for me unless recomended)And then they have to bribe me!!Enough going on with shoes crutches and trying not to forget myself out the door!Would drive me and my Dad quite barmy also don't want a wheelchair unless forced to..Tried it twice the light weight fold up one we couldn't assemble without my son!And they where all a danger steering me!Streets and doorways inaccessible on hollidays and most taxis even if told in advance would not take us ended up on a zimmer with my wrongly diagnosed fractured ankle!!But at least a semi Holliday although got to be repeated please wish us luck it's the same house.If I can manage this it will be fun!!
My son 13 has fa can you let me know where to buy please. Also what benefits etc it has been
My name is Stacey and I have had SCA1 for ten years. You are doing so much better than me, when I was first diagnosed I went in to denial, you are looking for ways to help your son, you are a wonderful Dad. Ataxia is all about achieving the best quality of life possible but don't let it take over. I have tried lots of things that I will share with you, some will appeal to you, some won't. Firstly I take Doctors Best COQ10 daily which makes a huge impact on my energy levels and I have also followed a gluten free diet for years. I am now taking a magnesium supplement for spasticity and that is helping too. I read about the OT vest just before Christmas and whilst I wasn't overly-convinced it would help me, it wasn't expensive and so I thought it was worth a try. Before Christmas I was in a pretty dark place, eating easy to prepare rubbish and rarely exercising. When I first put the vest on my immediate thoughts were "another silly waste of money", but the money was spent and so I put it on and waited. I tend to wear the vest most of the day and still don't exercise as much as I should but for some reason it's working. Ataxia is a whole body thing and slowly progressive and so are the benefits of the vest. A problem for your son is probably fine motor skills, children use them in every lesson at school. Mine have definitely improved and are still improving. The weights work on posture and if your posture is right then you walk better. I am a great believer in muscle memory and if you train your body to do things the right way after a while you do it without the vest. This is just a personal opinion but I don't wear my vest every day and feel that I already have some muscle memory. The last thing is independance. Being dependant on others is demoralising and even if the vest can improve your son's fine motor skills it would impact his life at school so much.
If I can ever be of any help please message because these forums are the best way of sharing ideas and experiences.
Has your son had a referral to a specialist Ataxia clinic? If not, you need to push for one.
Thank you for replying can you tell me where I can order vest from.
I want too try every option for my son.I'm his mom ,Marie. Simon is my son
I'm sorry Marie, you are an amazing mum 😍 I will try to work out how to send you a link but might have to wait until my son gets home. If you put OT vest in the google search engine you should get it, there is a youtube video too.
Can order the OTvest at otvest.com or order page otvest.com/order/ There is some research about how putting weight in the shoulders or upper body helps with walking (or gait, reducing sway) and the articles or research is shown at the bottom of the page ontaskvest.com/2016/04/move...
Hope this helps.
Hope this helps!!
Scope if in U.K. Specifically for children but help adults as well I would get zero without them also a carers assesment (Done by a charity they are great)Cares support..
The weighted vest with weights around the upper chest and upper back for trunk stability can be purchased at otvest.com. Hope this helps!
Yes please!! Something I have wanted to try fir a while now. Not just for me but my brothers too!!
I have SCA 1 and since your brothers have it too it sounds as if you have one of the hereditary ataxias. I had my three children before I knew that I had Ataxia so we don't know yet if they have it. I have done lots of research and in addition to wearing the vest follow a gluten free diet and take 600mg COQ10 daily and have just started taking a magnesium supplement for spasticity. The supplements have definitely helped but after I retired the depression definitely kicked in. I orginally fancied trying the balancewear vest but the cost and the fact that you have to have it adjusted fairly regularly put me off. Just before Christmas I read about the OT vest and for the price decided it was worth a try. At the very least, it will make you feel relaxed but it seems to have done a lot more for me. Firstly, what I like about it is that you pop it on and forget about it. I still feel that I am improving so I can only tell you about my progress to date, I'n no Physiotherapist but I'm sure muscle memory has something to do with it. My fine motor skills are so much better and so is my posture. If your posture is good suudenly you seem to walk better and all my movements take less effort and that means I am less tired. Now that I am less tired I am exercising a bit more and I can feel that my body is getting stronger.
If you have any other questions please message me.
Firstly I would like to thank u for your feedback. Yes we all have SCA3, passed on by mother whom we lost 5 years ago what I would like to know is if it helps with your balance.. r u able to walk unaided or do u use an aid.
And if u don't mind ne asking how much exactly did u pay for it?
Have a look at otvest.com they have a price list. I also had to pay a customs charge of £35 so you need to add that on.
we are actually thinking of going there ourselves in May how long does it take to get fitted for the vest. I have being in touch with Cindy Horn.... who did u see? And Where?
The vest that I have got is the OT vest, I think that the one you are looking at is the balancewear vest by motion theraputics. I initally considered this vest but you will need a Physiotherapist in England who has been trained to adjust the vest because they do need adjusting periodically. I don't know of anybody in England trained to do this, do you?
Oh so what exactly is an OR Vest... I thought it was the same one lol!! So who do I contact for an OT Vest.... and do u know if it is better then the one I have been thinking about getting...
Have a look at OTvest.com and they have a video on youtube as well. I honestly can't say which vest is better, ptobably the balancewear one. I did mention the balancewear vest to the nurses at Sheffield Ataxia hospital and they were concerned that I would become overly dependant on it but of course that was just their opnion. It seems that if it works the balancewear vest gives immediate results but the one that I am trying will take a bit longer and it's too early to say how much independance I will actually achieve. They do say self-confidence is a big issue with Ataxia and it is with me, as I get more confident I attempt more, riding next 😀
Thank U So Much!! I Really Appreciate You Chatting To Me About This!! All The Best With Your OT Vest!! R U On Facebook?
My Email Address Is:-
Please Do Keep In Touch!!
Sorry, I'm a bit old for that 😫😫 you are great to chat to. xx
Pls keep in touch... I am not exactly a spring chicken either lol!! I am 53......
Thank u for talking to me xxxxx
Yes you are, i'm 57 😀 . xxx
My only aid is my husband because he walks quickly and likes to get a move on. I have recently bought a four wheeled walker to use at carboot sales but that is more to give me self confidence, I am hoping that the vest will mean I can manage without it.
Great!! Thank u so much..xxxx
Hi we have just received an otvest for my husband. He is noticing that his walks better. It is a bit early to notice any other inprovemebts. Any advice on how or when to wear it for best results?
Hi Lory, I'm pleased that the vest is helping your husband too. Firstly, when you wash the vest, wash it at 30 degrees and wash it on a short wash. I always dry mine on a hanger or it could go on the washing line when the weather is good, it doesn't need ironing. In terms of wearing the vest, I tend to pop it on and just forget it and try to wear it for about six hours a day but always when I go out. In January I bought myself a walker because I find walking long distances a challenge but really love walking the dogs and walking round car boot sales at the weekends. I never expected the vest to be an alternative to the walker but my walking and stamina have improved to such an extent that I don't feel that I need it. I have had my vest for three months now and I am still noticing improvements, I now mostly sleep through the night but that has only started to happen recently.
So probably my advice to your husband is just keep wearing the vest and enjoy the changes as they happen. The vest will be having an impact on your Husbands body and he will be using muscles that probably haven't been used for a long time and so he might ache sometimes. Don't let him push himself too hard, there is no need. If you ever fancy an update on my progress please drop me a line.
Thank you for your prompt reply. At the moment things are definitely improving with my husband´s balance. Fingers crossed!!! I will keep you posted.
Have to take the weight piece out to wash the OTvest denim vest and just wipe off the weight part--otherwise the weight piece can get ruined. It is held in place with velcro so can be taken out easily. How are you doing?
I take the weights out, wash the vest at 30 degrees on a short wash and then put the weights back in when the vest is dry. I have never ironed it because it doesn't need it.
The denim weighted vest with the weights across the upper back and upper chest is the OTvest and the web site is otvest.com Shows woman with SCA 1 wearing it and walking and then taking it off and walking and it reduces her instability when she has it on. That is the one Brommie wrote helps her (Stacey). I just tried to click on the web site and you have to have the www in to make it complete otvest.com Look at the USES page and click on the wording about "ataxia" and movement disorders and it takes you to a page that gives a lot of information. At first it looks like it is more for children, but it is for all ages.
What the heck are they how the heck do you get into them(Buttons or zips not for me)And thirdly ££££?????? I shall end up skint I have to pay nouroligist today££££ ----- my bank balance will be 49p!!🤡Until next Tuesday!All bills paid in advance I hope no surprises ...My son and I paid housekeeping to my Mum.And I am going out alone (well not alone group of friends from my sons class for no wine one no wisdom(The less points you get the more likely you are to win the wine so I am the secret strategy call out the wrong answers or write down the wrong answers )They can't read them anyway!!So that way they win the wine(And yes I am going to have 2 glasses of wine might help my balance)I have not drunk since new year (None last year it's flipping boring)I am not likely to drink all the time but life doesnt all revolve around medication side effects physio and not drinking because it lowers your seizure threshold I haven't had one since I came out of hospital in October so🤞🤞🤞I did forget my tablets last night though completely?They are sealed in a doset labelled colourless coded etc!!!
The OTvest has snaps that are easier to open and close than buttons or zippers. I know what you mean about zippers, And buttons. Snaps are good
The OTvest has snaps that are pretty easy to close, but you don't have to close them if too difficult. The weights are hidden inside so other people can't tell they are there! The vest helps the weights stay in position, so it is good to have it snapped, but since you aren't probably moving TOO fast--you don't have to snap them up. You have to take the weight insert out to wash the denim vest, and the piece that holds the weights inside can be cleaned with damp cloth. Yeah, buttons are too tough, but snaps are okay.
Yes please Brommie. Who fitted yours and did you just order one? Also if the weights need changing who advises you?
I hVe two sets of weights, 3lbs and 4lbs, iI found that the heavier weights made my back ache. The weights fit in to a denim vest with velcro and unlike the balancewear vest they don't need any adjustment.
My only reservation about the vest is that wearing it in the hot weather is uncomfortable and that has stopped me wearing it and I can definitey feel a deterioration in my balance and fine motor skills.
I have decided to sew velcro in to a lightweight gilet and attach the weights to that since it is only the position of the weights and not the fabric of the vest that makes the difference. I should have done it before now but I am rubbish at sewing and it will involve getting the sewing machine out of the loft.
Hope this helps
Yes please ! I am very enthused to get one but many people (inc. neuro pysio ) are very sceptical of it.
Consult with an occupational therapist who knows about the importance of core stability.
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