From academic success to cognitive disability

Apologies - struggling with cognitive dysfunction / PEM and not sure where to put this. Also sorry that I'm not able to read all posts in this thread.

I agree with the idea hat accessibility of ME advocacy could be improved with regard to cognitive impairment/ fatigability.


Again, DecodeME (which I think combines research and advocacy) seems a good example how to do that. They always provide transcripts to videos -- for me, that's hugely helpful. Also, they use language that is easy to understand. I now didn't check if there website also has a text-to speech- reader installed. (As some people find it easier to listen than to read; and for some it may even alternate --- sometimes it's easier to read, sometimes easier to listen/ watch videos).

I'm aware of the difficulty that people with ME-type cognitive impairment might struggle themselves with making contributions that are accessible for others . E.g. the more brain-fogged the less I'm able to make my points clear or to use simple language (word finding diffculties so I have to circumscribe).

See also this members poll: https://www.s4me.info/threads/poll-how-does-your-illness-impact-your-forum-activity.28582/

 

It took me weeks to write these posts.

So please don't think that someone who can read a lot or write lengthy posts doesn't experience cognitive dysfunction too. You don't know how they struggled and at what cost they read and post (and how much PEM will follow).

I don't dare to imagine a situation where all people with ME suffered with cognitive dysfunction as much as many of us do -- we wouldn't have the progress of the recent years and we wouldn't have this forum.

What I also wonder about is how to make advocacy work more inclusive for people with non ME-Specific disabilities. I think visual, speech and hearing disabilities are the most relevant.

To minimize barriers seems lot of work but maybe there are disability organizations that could help with that?

Perhaps it's even possible to find support for getting video / audio transcripts as this is something which is also relevant for people with hearing disabilities?

I think joining with disability organizations would be a good idea anyway; there could be more mutual awareness?

 

Now not able to post myself but I think it would be good to have a thread and/or poll on what people think could help. E.g. for me I think it would help to have a personal assistant once or twice a week whom I could email texts /communication that need some help.

With regard to forum activity that could be someone who could help me with searching references, suggesting wording when I'm only able to make notes etc. Also, when I'm not able to, helping with technical things like just posting what I've written in my drafts app.

I'm afraid for these kind of things it's not realistic to get personal assistance prescribed from a doctor?

I thought I will try asking my doctor if they think perhaps an occupational therapist could help with that? I mean they do memory training, perhaps they also could help with the mentioned tasks?

It may sound as if I'm just too lazy, too impatient or have too high expectations on what I want to write. (If only others could experience for one day the headache and extreme exertion and utterly disproportionate time it takes to just write some lines.)

Anyway, it will be difficult to find someone who could help with that.


I'm in the dilemma that currently I don't have the capacities to reach out to disability organizations/ coordinate with ME charities/ patient organizations which I think would make sense.

I'm aware that other people on S4ME won't have the resources for pursuing that either any time soon. But perhaps something to add to the list of future projects?

Related threads:

https://www.s4me.info/threads/communication-challenges.5925/ (members only)

https://www.s4me.info/threads/how-c...h-advocacy-etc-be-made-easier-for-pwme.23070/

 

DecodeME certainly combines research with advocates (patients and carers). We are a research project so our principle aim is obviously to recruit as many pwME to the project as possible and then deliver the analysis of the questionnaire and genetic data that we get, but in promoting the study we also try to talk about why there is the need for the study as well, so I suppose there is an element of advocacy there as well.

The website doesn't have a text-to-speech reader installed but we do look to record an audio version, when possible, for our blog post and for our webinars we also provide an audio-only version after the event.

 

My personal assistant does some this on top of a bit of food prep and cleaning and taking me too medical appointments. She does two half days a week normally, but occasionally can do some extra time if I have other things on. PIP more than covers this if you are in the UK.

With some things, having someone to go through them with me a number of times, like on line shopping orders helps me do them myself, but anything new or that only happens occasionally I need help with. She also does phone calls for me which I really struggle with.

 

The enhanced rate for the care e1ement of PIP is on1y £92.40 a week, so it nowhere near covers the dai1y care needed to give someone with severe ME a dignified qua1ity of 1ife. Minimum wage for a PAYE carer is current1y £9.50 an hour, so a se1f-emp1oyed carer wou1d need to ask a fair bit more per hour to cover their additiona1 costs. In my area the quoted price for these sorts of se1f-emp1oyed carers is circa £18.50 on average -

https://www.curamcare.com/care-type/hourly-care

In rea1ity, if you are rura1 it's a1most impossib1e to find a carer wi11ing to trave1 due to the additiona1 time and costs invo1ved, un1ess you can find someone very 1oca1 to your home.

And of course PIP is expected to cover a11 the other additiona1 costs of being disab1ed, such as a specia1 diet, additiona1 home heating, non NHS treatments and supp1ements etc. If ones on1y income is DWP benefits, then most disab1ed peop1e now need to use their PIP just for genera1 1iving and househo1d costs, with the current cost of food and energy.

Many peop1e with severe ME shou1d be entit1ed to a persona1 assistant through socia1 care, but unfortunate1y the socia1 care system is broken in the UK (a1though I be1ieve Scot1and offers free socia1 care for specific aspects of essentia1 dai1y 1iving on1y, such as washing and mea1 preparation).

 

Sorry, @Simbindi I did not intend to say PIP covers full care, rather that it covers the two half days care I have. I am lucky to have an excellent PA who also works with another person with ME. Unfortunately the two half days are as much as she can offer me most weeks. Some of the time I have a day a week from another person, but would not use them to deal with phone calls, emails or paper work.

 

Some years ago, when I was 1ess severe I was hoping to do a 'supported se1f-assessment' for Socia1 Care.

https://www.scie.org.uk/care-act-2014/assessment-and-eligibility

However I discovered you have to contribute towards the costs, so are on1y 1eft with bare1y enough to 1ive on - certain1y not enough for someone 1ike myse1f, who 1ives a1one in an o1d very rura1 counci1 house semi, with my pets (which are what make my 1ife worth 1iving).

However, I do know autistic adu1ts who have managed to get up to 30 hours of funded socia1 care, even without having physica1 disabi1ities (but they are parents having to manage autistic and non autistic chi1dren). It may have been worth it if I was actua11y ab1e (and desired) to 1eave the house and engage socia11y with others, as socia1 care shou1d have covered the he1p required to enab1e this.

At the time I was attempting a part time (spread over 3 years) OU masters so was hoping to be ab1e to get invo1ved with autism groups, but I found distance 1earning with the OU more inaccessib1e than physica1 university (I am a1so dys1exic and have ADHD). They were much more inf1exib1e than the universities I attended in the past! I don't know whether other universities offering distance 1earning courses wou1d have been better or not.

But trying to study made my ME worse, my cognitive abi1ities dec1ined marked1y whi1st attempting this to the point I cou1d bare1y read a page of text.

I managed to get some usefu1 things through the disab1ed student a11owance. I was given a decent desk (the type that you can raise up and down to get the perfect height) and a fantastic ergonomic chair worth about £2000 in tota1 - https://www.posturite.co.uk/rh-logic-400-high-back-ergonomic-office-chair ), However, the system has so many hoops to jump through when you don't have the support of a physica1 university disabi1ity team, that I never managed to comp1ete the app1ications for everything I needed (such as getting the 1aptop and software or arranging my mentoring support). I gave the course up part way through the second year.

As a post grad you were required to reapp1y every year p1us arrange your own support, tota11y impossib1e for someone with severe ADHD to manage, even without the ME! Had I succeeded in actioning my report's recommendations I wou1d have been given a coup1e hours a week support for the dys1exia and ADHD (under 'mentoring') p1us an hour a week for menta1 hea1th support if required. This was a11 via a non income assessed grant.

https://www.gov.uk/disabled-students-allowance-dsa

 

I misread your post - I thought you had written two and a ha1f days care!

 

I think an occupational therapist could be very helpful, as some are very experienced with a range of cognitive disorders eg. head injury and mild cognitive impairments ranging to dementia.

You may also benefit from having neuropsychological testing to quantify your cognitive deficits, which may help with disability aid funding.

I know how hard cognitive impairment is, I find it hard to focus and construct meaningful sentences to contribute at times and just give up.