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Category: Multiple Sclerosis (Page 1 of 2)

PIP Personal Independence Payment Delays And The Repercussions On Mental & Physical Health.

PIP Personal Independence Payment Delays And The Repercussions On Mental & Physical Health.

Disclaimer Scotland: People in Scotland will no longer be able to make a new claim for Personal Independence Payment (PIP) from August 29 when the benefit will be replaced by Adult Disability Payment (ADP) in all 32 council areas across the country. At present, 13 local authorities are now offering ADP to adults over 16 and under State Pension age living with a disability, long-term illness or a physical or mental health condition.

Most people don’t like complaining and will not make a formal complaint about anything let alone the DWP, because they believe it would be a waste of time and could cause a knock-on effect on their other benefits.  For those that do complain and, after many months of pursuing, end up giving up.  The ones that are determined come away with a pathetic apology and feel they have hit a brick wall. They accept the mediocre admission by the DWP or Atos, Capita, that these organizations made a mistake and nothing else happens, their mental health is simply disregarded without a second thought.

ANN ABRAHAMS – REPORT

However, the most recently released report reveals that a tiny number of people pursue their complaints further and end up being awarded large sums in compensation. The report is called ‘Small mistakes, big consequences’ and is written by Ann Abrahams, the Parliamentary and Health Service Ombudsman. Ann Abraham should be a name that should stand out as well as your local MP.

Remember nothing happens quickly after all these people are not in a hurry to find money to put food on their tables, only you are”…

(The report can be downloaded using the following link: Parliamentary and Health Service Ombudsman Small mistakes, big consequences HC 6 (publishing.service.gov.uk)

MEDICAL EVIDENCE

Your illnesses and disabilities should be corroborated with medical evidence and letters from GPs and consultants. This payment is to help with your daily living and is not an alternative to being a benefit bum and living off benefits. This payment is for people who truly deserve the extra money because of their disabilities. The reason why the Government is clamping down is because of too many fake, lazy individuals that see this as free money.

DELAYS

Delays are causing people to become ill through worry and stress. https://www.mind.org.uk/information-support/types-of-mental-health-problems/stress/what-is-stress/ Hundreds of thousands of disabled people are having to wait for £300 million of vital support, according to a new analysis from Citizens Advice.

Citizens Advice said: “PIP, which can see people with an illness, disability or mental health condition receive up to £157 a week, is a lifeline for millions of people, yet the government is playing with people’s lives and their health.

There are currently around 327,000 Disabled people on the waiting list, with an average waiting time of five months. Citizens Advice projects this means £300 million of payments that would be awarded are being held up, after all the government needs to look after themselves first before thinking about the other half of the population. You are not their priority, although you should be.

“Waiting for this payment is having a huge impact on people’s lives. Delays in assessment mean that support is held up, forcing people into impossible choices as they try to make ends meet.”

STATISTICS

  • People are facing humiliation as 1 in 5 people have needed to go to a food bank in the last 3 months who have also had an issue with PIP. Many of those waiting for a decision will also be eligible for the £150 disability benefits cost-of-living support payment but are unlikely to get it before October’s mammoth energy price hike.
  • There are more people coming to Citizens Advice for help with PIP than with any other issue in fact an astonishing 41% more than any other issue.
  • Around 150 people are contacting advisors at Citizens Advice every hour for one-to-one help, and its webpage on “How the DWP makes a decision on PIP claims” had 27,700 page views last month, up 56% year on year.

CITIZENS ADVICE

Citizens Advice is calling on the Government to take urgent action to relieve pressure in the system and help get money to people who desperately need it. It is calling for an emergency plan from the Secretary of State for Work and Pensions to urgently tackle this backlog, including reducing the number of claimants required to have a medical assessment, which is the main reason for these delays – and extending the award period so people have to reclaim less often.

The severe PIP assessment backlog is not just affecting new claimants but also those seeking reassessments or needing extensions to their claims. These lengthy delays are having a substantial impact on their applications for other benefits such as blue parking badges, bus passes, and Motability vehicles.” https://disabledentrepreneur.uk/bus-passes-for-the-disabled/

Backlogs in the disability benefit assessment system are having significant knock-on effects on disabled people’s ability to live independently, new evidence has shown.

These delays are also causing further turmoil for disabled people whose support needs have increased and believe they should now be entitled to higher PIP payments.

The evidence has come from the Benefits and Work website, which has heard from a string of existing PIP recipients who say the delays are causing tremendous emotional distress and significant problems.

In March, Disability News Service (DNS) reported how the backlog of disabled people waiting for a PIP assessment had more than trebled in the last five years, from 88,500 in October 2016 to nearly 312,000 by December 2021.

DNS has also reported on similar problems with the Access to Work system, with DWP figures showing the number of disabled people waiting for decisions on their applications has more than quadrupled in a year from just 4,890 in March 2021 to 20,909 in March this year.

One of the ways the Department for Work and Pensions (DWP) is dealing with the lengthening PIP assessment backlog is by providing temporary (3 months), short-term extensions to PIP claimants who are waiting for their benefits to be reviewed.

Editors’ Opinion – “Do they not have enough unemployed people to do a bit of paperwork? How about outsourcing the work would be another idea and finally only appraise the people that have medical evidence to corroborate their illnesses”?

The Government is purposely dragging its heels in order to save money.

“This is Evil, a Disgrace, and a Shambles”.

Vicky Foxcroft, Labour’s shadow minister for disabled people said:

“With the cost-of-living crisis hitting disabled people particularly hard, it is shocking this government has not got a grip of the PIP backlog, which has been going on for months now”.

“Short-term fixes aren’t enough anymore. Disabled people deserve so much better than this; Tory ministers need to get a grip on this backlog, especially given the impact it is now having on other benefits for disabled people.

“A future Labour government would invest properly in disabled people, ensuring they had the support needed.”

A DWP spokesperson said:

“We closely monitor the progress of PIP cases awaiting assessment and take all steps possible to ensure claimants receive the vital support they require”.

“We can and do make in-house decisions on award reviews without referral to assessment providers where necessary and use a blend of phone, video, and face-to-face assessments to ensure support is given as quickly as possible.”

People Who Suffer From OCD

Daily Living Descriptor 6 – Obsessive Compulsive Disorder

The Upper Tribunal has recently made a decision (CPIP/3760/2016) about how people with OCD can claim points under PIP.

BACKGROUND

The PIP Regulations say that people who can’t do an activity listed in one of the PIP descriptors safely, repeatedly, to an acceptable standard, and no more than twice as slowly as a non-disabled person, shouldn’t be counted as being able to do that activity for the purposes of PIP. (I keep a note of my health online and so does my daughter. I think as a sufferer of OCD the form does not actually cover all the different types of OCD). https://disabledentrepreneur.uk/category/renatas-online-journal/ & https://disabledentrepreneur.uk/category/zena-online-journal/

Therefore there has been some confusion about people with OCD, who usually can do an activity perfectly well, but have to do it over and over again or in particular ways or at particular times.

(Assessors who are not specialized in diagnosing OCD or any other illness should not have any input about the claim – just because they have passed e-learning does not make them any more qualified than you or me).

The PIP descriptors and the regulations didn’t deal with this sort of situation very well and so lots of people with OCD lost out on awards. Now the Upper Tribunal has looked at the issue and made a judgment that will help people with OCD to earn points for PIP.

WHAT THE UPPER TRIBUNAL DECIDED

The Upper Tribunal case was about a person who took a very long time to get dressed because their OCD meant they had to repetitively try on lots of different outfits until she found one she was happy to wear. The DWP argued that this long time didn’t count for the purposes of PIP because it was just the person’s choice to try lots of clothes on. The Upper Tribunal, however, held that because the person’s hesitations and repetitive behavior were ‘the consequence of her health condition’, she was entitled to points because it took her more than twice as long as a non-disabled person to dress. But the UT did say that if the longer time had not been a consequence of her health condition, she would not have been entitled to points.

This decision is important because the principle that delays in being able to complete a task because of the consequences of a mental health condition like OCD can be applied to all descriptors, not just dressing. So a person with OCD who can eat perfectly well but who takes an hour to eat because of obsessive rituals about arranging the table, or a person who can wash perfectly well but who does so eleven times three times a day, could claim points under those PIP descriptors.

WHAT THIS MEANS FOR YOU

If you have OCD for example and have obsessive rituals or other behavior which means that you take much longer to do activities of daily living like cooking, eating, dressing, and so on, then you now can use this Upper Tribunal decision to strengthen your argument for claiming PIP.

Note that you will still have to be able to show that you have been diagnosed with OCD or a similar mental health condition and you do in fact have behavior that means you take much longer than a non-disabled person to complete daily living activities. Good strong evidence from people who know you will be needed.

You will also have to show that your behavior is a consequence of your mental health condition and not just your own preferred way of doing things. Showing that you can’t change the way you do things even if it is against your interests will be useful – eg that you miss appointments because you can’t get there in time owing to a dressing ritual.

DIFFERENT TYPES OF OCD

OCD is a very complicated illness it is not just about washing or checking or taking too long to shower, dress or cook food. It may be the fear of germ contamination (as I have). I know logically we are surrounded by germs but the thought of contracting something or being harmed through direct contact with an unsanitized area does not bear thinking about. I am cocooned in my own surrounding where I can keep my intrusive thoughts under control as best I can. My disabilities are not just OCD, they are Depression, Social Disconnection, and Cognitive Impairment (Cerebellar Atrophy) to name a few.

TIMING

As with everything, it all takes time and you are not a priority.

Upper Tribunal decisions take time for your claims, mandatory reconsideration, and appeals, and it may take some months before DWP and assessors finally make the decision.

Unfortunately for you, this causes considerable stress on your mental health and pressure on your finances. You can either suffer and do nothing other than wait or you could complain.

If your appeal is taking longer than expected you have grounds to contact the ombudsman.

If you have been treated unfairly and given the DWP and Tribunal time to respond and they have not within the timeframe then you need to start getting all your evidence together to build a case. You can take it even further and take it to an Ombudsman (Last Resort).

You can read the full judgement herehttps://www.gov.uk/…/ml-v-secretary-of-state-for-work-and-p…

USEFUL LINKS:

PIP delays leave disabled people hundreds of millions of pounds out of pocket – Citizens Advice

How do some claimants get thousands of £££ in DWP compensation (benefitsandwork.co.uk)

How to use DWP for compensation? – LegalBeagles Forum

http://en.wikipedia.org/wiki/Upper_Tribunal

http://www.justice.gov.uk/about/hmcts/tribunals

adminappeals@hmcts.gsi.gov.uk

Suing DWP for compensation … — Scope | Disability forum

Complain to us: getting started | Parliamentary and Health Service Ombudsman (PHSO)

FINAL THOUGHTS FROM THE EDITOR!

If an organization or entity causes you to become unwell because of their actions, they should be held responsible and should pay for damages.

If people are becoming mentally and physically unwell because of the Government’s actions then the claimants should be awarded compensation.

If you have been affected by:

  • Emotional Distress (causing, stress, anxiety, depression, intrusive thoughts, and making your mental illness worse).
  • Indirect Discrimination (entity assuming because you have an invisible illness you are classed as normal).
  • Harassment
  • Intimidation
  • Humiliation (having to go to food banks or being pitied because you are disabled).

Consequences

If your illness gets worse because of an entity’s direct action and in the cases of auto-immune diseases you can relapse because of stress: https://www.everydayhealth.com/hs/living-better-with-ms-guide/triggers-that-can-cause-ms-flares. then, you have under the human rights act the right to take further action. https://www.equalityhumanrights.com/en/advice-and-guidance/what-direct-and-indirect-discrimination

Flawed System

The PIP system is flawed, it employs people who are not qualified in the field of the illness (one needs to be a specialist in the field and should undergo years of training as well as qualifications to determine what the claimant is suffering from). The system is designed to degrade people and to make them unwell. The more people that become unwell the more money Big Pharma makes and that is how the world goes round.

Making a Complaint

Do exhaust all avenues of complaint procedures before contacting the ombudsman and do collate as much evidence as you can. If you have a blog or social media page share it with the people I have mentioned in this article. People usually take notice if you have a professional site and you know what you are talking about.

If you want our help and need a letter we can send you a template with all users, names, and addresses and you fill in the blanks. Our template letters are £5.00 and you will get a download link once the payment has been processed, if you want us to write the letter for you it will cost £25 per 1000 words. Your privacy and data will be safeguarded with a non-disclosure agreement.

PIP Mailing Address is:

Personal Independence (2), 2 Mail Handling Site (A), Wolverhampton., WV98 18B

Tel Number:

0800 121 4433 ( be prepared to wait 45 minutes to be put through)

Email:

contactus@capita-pip.co.uk

** Just to explain when I spoke to PIP today over my daughter’s award the woman said that my daughter or I would have to submit evidence by post. Knowing they had an email I said could it not be done electronically (I bit my tongue about saving the environment) and the woman I spoke to blatantly lied and said there is no email address.

The amount of time I had to wait to be put through could easily cause someone who has multiple sclerosis or any other auto-immune disease and suffers from bad stress and anxiety to easily relapse. Furthermore, I do not know who they employ because I had to spell Alemtuzumab out even though I clearly told the woman the word can be found on www.lemtrada.com.

I am not looking forward to the assessment my daughter is due to have because if they make my daughter perform like a circus monkey that will mean I will have to intervene. My daughter documents her health in her online journal on this platform. I am not looking forward to having to deal with these people.

Contact Us For a Template Using The Form Below:

Further Reading

DWP admits wrongly rejecting disabled people for benefits at record rate | The Independent

People who claim PIP or were denied benefit payments could be owed £13,000 due to rule change | The Sun

‘I’ve recently had my PIP benefit claim turned down – how can I appeal it’ – Mirror Online

Thousands of people ‘wrongly’ denied PIP disability payments after surging in DWP appeals – Mirror Online

#dwp #pip #personalindependencepayments #invisibledisabilities #indirectdiscrimination #humanrights #equalityact #ocdandpip #emotionaldistress #humiliation

Insulting My Intelligence, the meaning!

Insulting MY Intelligence.

I am rattled today because of an email I received from an agency that is run by my local council and they seem to separate themselves even though they are one. They are basically saying that they are not the local council and are passing the buck.

I am getting irate because this is costing me time having to argue with them and not to mention it is also affecting my daughter’s mental health and it is also affecting me. We both have disabilities and I fight my daughters’ battles even though it sometimes can also affect me too.

“No one can make you feel inferior without your permission.” – Eleanor Roosevelt

“Never argue with stupid people, they will drag you down to their level and then beat you with experience.” – Mark Twain

“Trusting someone’s opinion over your own is admitting you believe they’re smarter than you are.” – Charles Faraone

It takes a lot to get me rattled but people (sheep reading off scripts) do push my buttons and eventually if one does it enough times “you will see me blow”.

I am normally a calm person but if people purposely wind me up and think I am an idiot to believe the BS, they have another thing coming.

Not only this, the said agency is basically insinuating that Multiple Sclerosis is Not a Disability and they are undermining the results by the Professor of Neurology.

“This post serves as the foundation of the whirlwind I will stir and will happily sing like a canary”.

Me, The Singing Canary!

So despite showing evidence that my daughter has had a relapse this said agency is still in need of more evidence. My daughter’s neurologist is on annual leave should I demand he drop his holiday and everything else he is doing to pussyfoot around these people?

I find the behavior of this agency is causing emotional distress and indirectly discriminating which is against the law. If I have proven my daughter has relapsed and needs help getting around occasionally, as no two days are the same, you would think they would be more understanding but they keep putting obstacles in the way and causing distress.

I am dealing with this as I do not want my daughter to relapse again and I will not allow her to jump on one foot whilst touching her nose and act like a performing seal just to prove a point. I reiterate medical evidence will suffice and she will not be questioned by someone who is not qualified for the role (my daughter’s friend is a PIP assessor with only GCSEs to her name).

Indirect discrimination

Indirect discrimination happens when there is a policy that applies in the same way for everybody but disadvantages a group of people who share a protected characteristic, and you are disadvantaged as part of this group. If this happens, the person or organization applying the policy must show that there is a good reason for it.

A ‘policy’ can include a practice, a rule, or an arrangement.  

It makes no difference whether anyone intended the policy to disadvantage you or not.  

To prove that indirect discrimination is happening or has happened:

  • there must be a policy that an organization is applying equally to everyone (or to everyone in a group that includes you)
  • the policy must disadvantage people with your protected characteristic when compared with people without it
  • you must be able to show that it has disadvantaged you personally or that it will disadvantage you
  • the organization cannot show that there is a good reason for applying the policy despite the level of disadvantage to people with your protected characteristic

If the organization can show there is a good reason for its policy, it is not indirect discrimination. This is known as objective justification.

https://www.equalityhumanrights.com/en/advice-and-guidance/what-direct-and-indirect-discrimination

Note From The Editor.

With this said if an organization treats someone with ‘Multiple Sclerosis’ or any other ‘Invisibile Disability’ the same way you would treat a normal able body person, they are in fact indirectly discriminating, which is against the law.

With Multiple Sclerosis you have good days and you have bad days.

The weather can impact your health.

No two days are the same.

The same can be said with someone with mental health issues, one day you can be somewhat fine and other days you could be not doing so well.

There is no way of measuring or predicting if a person will be ok from one day to the next.

Not only this arguing with people (sheep), causes emotional distress which in the case of ‘Multiple Sclerosis’ can cause a person to relapse.

If this continues I will be looking to seek damages for:

  • Emotional Distress
  • Indirect Discrimination.

#travelcards #multiplesclerosis #indirectdiscrimination #humanrights

What Doctors Won’t Tell You.

Big Pharma.

What Doctors Won’t Tell You.

Most of us when we fall ill, trust our local medical practitioners to get the best remedies and advice. However one has to look at the fact that Doctors’ surgeries are small businesses and the revenue they receive, is from the drugs they prescribe, so it would make no sense to send a patient away and to offer holistic medicine. Pharmaceutical companies are not going to allow your doctor to promote alternative medicine for obvious reasons.

https://www.patrickholford.com/advice/how-gps-are-paid-to-prescribe-ineffective-drugs/

https://www.propublica.org/article/doctors-prescribe-more-of-a-drug-if-they-receive-money-from-a-pharma-company-tied-to-it

The pharmaceutical industry totaled 1.27 trillion US Dollars in 2020 and is responsible for the research, development, production, and distribution of medications. The market has experienced significant growth during the past two decades, and pharma revenues worldwide.

https://www.statista.com/topics/1764/global-pharmaceutical-industry/#dossierKeyfigures

https://www.statista.com/statistics/263102/pharmaceutical-market-worldwide-revenue-since-2001/

An alternative would be to try holistic medication and if that did not work then resort to seeing your doctor. Holistic medicine aims to improve health and wellness through the body, mind, and soul. Usually, holistic medicine combines traditional medicine and complementary and alternative medicine (CAM).

(Disclaimer – You must visit your doctor if you have a serious condition and you should not put off something that if caught quickly can be treated. If you are seriously unwell you should visit your local doctor as soon as possible and not delay your recovery by trying to cure it yourself). Holistic medicine is for people like me who have been on medication for 30 years and find it has little benefit so will look for alternative medicine, whilst still continuing to take the prescribed medication, until a cure is found).

https://www.healthline.com/health/holistic-doctor

Note From The Editor

I have recently read that Blueberries have medicinal properties: Blueberries can help heart health, bone strength, skin health, blood pressure, diabetes management, cancer prevention, and mental health.

https://vashiva.com/dr-shiva-live-blueberries-heart-health-does-your-doctor-know/

People who use blood thinners, such as warfarin, should speak to their medical practitioner before increasing their intake of blueberries, as the high vitamin K content can affect blood clotting.

I am all for improving mental health and when I have been prescribed medication for the last 30 years that has little to no effect I have to look at alternative solutions. I am definitely going to include blueberries in my diet from now on: https://www.medicalnewstoday.com/articles/287710

Other Drugs and Multiple Sclerosis.

By coincidence, a drug I have previously written about “Lemtrada Alemtuzumab” for example is an infusion that my daughter is taking this week for the treatment of multiple sclerosis and the cost to the NHS (UK) is $158,000, followed by $60,000 increments for each treatment: https://multiplesclerosis.net/living-with-ms/lemtrada-economics-ms-treatments One needs to read the “Important Safety Information” in the popup of the website to comprehend my concerns in the “Cymru Marketing” article I wrote.

https://www.telegraph.co.uk/news/2016/06/30/individual-nhs-doctors-receiving-100000-per-year-from-drugs-firm/

https://www.abpi.org.uk/reputation/disclosure-uk

https://marketingagency.cymrumarketing.com/2019/10/15/lemtrada-alemtuzumab-sanofi-genzyme/

https://www.gov.uk/drug-safety-update/lemtrada-alemtuzumab-updated-restrictions-and-strengthened-monitoring-requirements-following-review-of-serious-cardiovascular-and-immune-mediated-reactions

Dr.SHIVA Ayyadurai, MIT Ph.D

To learn more about Dr.SHIVA Ayyadurai, MIT Ph.D. – Inventor of Email, Systems Scientist, engineer, educator – presents a CytoSolvert Health visit:

https://vashiva.com/join/

https://vashiva.com/dr-shiva-live-how-pumpkin-seeds-support-cardiovascular-health-a-cytosolve-analysis/

https://vashiva.com/dr-shiva-live-blueberries-heart-health-does-your-doctor-know/

https://vashiva.com/join/#freebook-m

https://truthfreedomhealth.com/

#holisticmedicine #bigpharma #lemtrada #alemtuzumabsafety #doctorpayouts #alternativemedicine #pharmaceuticals

Zena’s Online Journal – Alemtuzumab.

Zena’s Online Journal – Alemtuzumab.

Today I started my Alemtuzumab treatment at the Health University Hospital Wales in Cardiff.

It was touch and go last week as I was just getting over my chest infection. I had to have emergency antibiotics to clear the infection before starting my treatment, followed by an x-ray to make sure it was safe to go on to the next phase.

08.00 am

So today is the day and I am having my treatment, I am now hooked up to the infusion drip, I have had steroids, aciclovir, 1 x antihistamine, 1 x antibiotic, 2 x paracetamols, and ibuprofen.

I feel I should have gotten there a little earlier because by the time I had my ECG done this morning I started to get hungry. My mum told me to order a Deliveroo, which I would not do, can you just imagine a pizza delivery rolling up.

Anyway, I have two more days of this so will keep you updated as the days progress.

15.52 pm.

My treatment is over for the day but I have a very high temperature and a really bad headache. They are monitoring me for the next two hours.

I did not bring my Apple watch to monitor my heart rate although it was noted on their machines that my heart rate spiked to 180/60.

I will charge my watch tonight.

I had to share my room with another lady who told me she was only in for the day and was only getting one day of treatment as she suffers from Stiff Person Syndrome. She told me she gave up her career in Law because of her illness.

https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome

I won’t post two more separate posts but instead, I will just update a continuation of this one tomorrow.

Update 05/07/22

My temp was a little high 37.6 -37.7 but we came to the conclusion it was probably because I walked in and it’s warm out. The nurse said I had a higher level of glucose in my wee but she said it was probably from my steroids yesterday and told me to avoid eating so much sugar and then lastly I had an elevated CRP level in my blood which can be an indication of infection but because I’m not showing any symptoms of infection, they’ve decided to continue with the treatment.

I’m on steroids as we speak. The doctor from yesterday annoyed me, he just stares and lingers and then comes over and tells me about my blood and asks to listen to my chest then tells me to breathe in and out, like wtf do you think I normally do? (I get it, he was checking my lungs but what is the point when I had an x-ray to check for a chest infection) Does he not think I breathe on the regular? 🙄

I’ve had my cannula removed, don’t think my vein could handle it any longer because the nurse said she could see it was a bit swollen and I did say it was really tender to touch so she just said she’ll take it out and re-do it.

Update 06/07/22

Today is my last day of treatment and have had the awful doctor again today that does not wear his name badge and only introduces himself as ‘Doctor’ he never takes notes or writes anything down. With a little investigation, I found that all doctors and medical staff have to wear name badges otherwise they could face disciplinary action. Read the NHS Policy below:

HR_150

I should by rights report him and have sneakily taken a photo of him whilst he was not looking. ( I have not published it because of data protection but it is on my phone). He could be a civilian pretending to be a doctor for all I know and it seems weird that he gives off bad vibes, even the patients sharing my room agree with me.

08.13 am

My obs were fine and so is my wee.

Will give a final update once I have left the hospital later today.

13.37 pm

I had to have a second blood test done of the day not sure why.

15.37 pm

I had to have my third blood test because someone lost my second set of blood in transport so I’m not in the best of moods.

16.32 pm

I was finally discharged. I was told that they have marked my blood as urgent and if I do not hear back from them no news is good news so to speak.

I did not have a high-temperature today, but I did have severe heartburn, and everything I drank and ate tasted metal, even the tuna sandwich. I also started to have a headache.

I am glad it’s over, although for the next 3 weeks I have to self-isolate.

I will now just have to wait for my next MRI to see what changes have happened but that won’t be until later this year Sept/Oct time.

Update 07/07/22

Just a quick update the dreaded rash has reared its ugly head it is all over my legs and my arms. I have antihistamines which the hospital gave me but it is not a prevention of getting the rash or a cure it is just a remedy to ease the discomfort. I am going to buy some chamomile lotion which I am surprised the hospital did not give me. I suppose because they did not see a rash at the time I was on the ward I guess they thought I did not need it. I look like I have chicken pox.

08/07/22

LEGS UPPER AND LOWER.
TORSO

How long does it take for your immune system to recover after Lemtrada?

After IV administration, there is rapid and profound lymphopenia that gradually recovers (return of absolute lymphocyte count to the lower limit of normal in 40% of patients at 6 months and in 80% by 12 months).

Is alemtuzumab a chemotherapy?

Alemtuzumab is a type of targeted cancer drug. It’s a treatment for some types of leukaemia and skin lymphoma. And may be used as part of a stem cell transplant.

https://my.clevelandclinic.org/departments/neurological/depts/multiple-sclerosis/ms-approaches/lemtrada-alemtuzumab

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/alemtuzumab

#ms #multiplesclerosis #multiplesclerosistreatment #lemtrada #alemtuzumab

Zena’s Online Journal MS Journey

Zena’s Online Journal MS Journey

This is my online diary of my health, this is a place I come to release all my frustration and vent. Sometimes you just have to let off steam…

As most of my family, friends, and followers already know I am about to start treatment with ‘Lemtrada Alemtuzumab’ on the 4th of July. But first I needed to start my listeria diet, which I have.

The amount of stress this is causing me is unreal, not only for the preparation for the treatment but also for life’s hurdles.

Today I am up at the hospital to have my blood and collect a prescription that should have been ready for me to collect but I have to waste one and half hours waiting for it to be prepared.

I have previously done work experience whilst I was in the sixth form at this hospital and have been shown how the medicines are dispensed. Basically, someone types something into the computer, and a revolutionary machine sorts it out, dispenses it, and then all the pharmacists do is stick a sticker on it, it’s that quick, so I do not understand the hold-up.

STRESS

But my stress is a build-up of other events that are going on in my life. For example ‘Transport For Wales’ are constantly on my case going on that they have not received my new PIP award. PIP is so backlogged that they keep reviewing every 3 months without actually awarding anyone and it is just a waiting game. When I first applied I was told by (TFW) that I was not disabled enough to qualify for a bus pass but that was overturned as I had a (PIP) award.

“I have relapsed and am due to start treatment on 4th July 2022 and if that is not proof I have a progressive disease, I do not know what is? I am not going to jump through hoops for no -one, just to justify that I am disabled. My letter from the hospital should be evidence enough”!

My mother who is my carer has reached out to the ‘Transport For Wales’ (TFW) Agency and it seems it goes over their heads even going as far as saying that they have not received anything from me or from her. My mother actually wrote an article regarding bus passes and is waiting on an update. https://disabledentrepreneur.uk/bus-passes-for-the-disabled/

The stress this is causing me is unbelievable. It does not stop there, a few years ago I had my bloods taken at the same hospital that I visited today and one of the nurses butchered my vein, a few years later I think I had the same woman because my arm is in so much pain.

MY HEALTH

Like I said it is one obstacle after another. I am on my third week of coughing as I have a viral infection but have been told by the Neurologist and the MS Team that I need to get rid of my cough before starting my treatment, otherwise, it won’t go ahead, I was told by the MS Team to start antibiotics prescribed by my GP last week.

In order to get a consultation with a GP, I had to phone the doctor’s practice and was told by the receptionist my matter was not an emergency and to phone back, the following day on a first come first seen basis. (Excuse me but since when are receptionists qualified to make those decisions)?

I phoned back again the same day and this time I said the consultant at the hospital insisted it was urgent to which I was told by the receptionist a doctor would phone me. (This could have been done and dusted on my first call but it is what it is and is done now).

I waited all afternoon and finally spoke with the head doctor at the practice (Dr.C) who had a tone on her like I was inconveniencing her. (Sorry is there something more important that you could be doing, rather than dealing with me)?

So all in all I am not coping well, especially with people who are ignorant or simply do not care.

#multiplesclerosis #ms #neurology #nhs #gp #tfw #onlinejournal #zenasonlinejournal

Bus Passes For The Disabled.

Bus Passes For The Disabled.

You can apply for a disabled person’s bus pass or rail card if you have an illness and you cannot manage to walk long distances.

People with, mental, physical, and learning disabilities are entitled to apply.

The criteria are that you have to be receiving personal independence payments or a disability living allowance.

You or someone else can apply on your behalf, such as a friend, family member, or carer.

Once approved you will be able to travel for free by bus or get 30% off your train tickets.

Most applications are through your local council as they are the ones that are in charge of public (bus) transport.

Alternatively, you can contact your local Citizens Advice which can help you with the application if you need it. 

Applying for a railcard

You need to use this link to Find out if you’re eligible and how to apply on the National Rail website. Unfortunately, if you do not qualify, you will have to pay the full price for your train tickets. If your application gets rejected you cannot appeal.

Applying for a disabled person’s bus pass 

Criteria:

  • you are blind or partially sighted, deaf, or unable to speak.
  • you cannot walk very far because of a disability, illness, or injuries, such as multiple sclerosis or autoimmune disorder, or a mental illness.
  • you are immobilized you do not have arms or legs.
  • you have a severe learning disability.
  • you’ve been refused a driving license because of your health (but not because of problems with drugs or alcohol). (Although drug addiction and alcoholism is also an illness).

To know if you are entitled to a free bus pass visit the Government website on GOV.UK and see what evidence you’ll need to show if you are eligible.

If you live in London

You’ll need to apply for a ‘Disabled Person’s Freedom Pass’ instead. The eligibility criteria are the same as for the rest of England.

Follow the steps on GOV.UK to apply.

If you don’t qualify for a Disabled Person’s Freedom Pass, you can ask your council for a ‘discretionary bus pass’. Some London councils give these to people who aren’t eligible for a Freedom Pass but have problems getting around.

You might be able to use Dial-a-ride – a free door-to-door bus service run by Transport for London (TfL). You can become a member if you have a long-term disability or if you’re over 85 years old.

You can find out more about Dial-a-ride on the TfL website.

If you are refused a bus pass.

You can appeal to your council if your bus pass application was refused. Check your council’s website to find out how to appeal.

You can also visit your nearest Citizens Advice – an adviser will discuss your options.

Other help you can get.

If you are on a higher disability rate you may also be able to apply for a car, mobility scooter, or powered wheelchair.

If you’re eligible for a bus or rail pass, you might also be able to get:

It’s also worth checking you’re getting all the benefits you’re entitled to – you can use our benefits checker to easily find out.

Final Thoughts From The Editor

Remember you should get what you are entitled to and councils will not make it easy for you otherwise everyone would be doing it.

You have to stand up for your rights or have someone that can appeal on your behalf.

With this said my daughter who has multiple sclerosis and has relapsed, thus is starting her round of treatment of Lemtrada Alemtuzamab on the 4th of July 2022 and finds it hard to walk long distances is in receipt of Personal Independence Payments. Her review for PIP has been postponed and keeps being postponed every 3 months. I am my daughter’s carer and find that this is causing unnecessary stress for my daughter and I have cited that stress can cause people with multiple sclerosis to relapse.

I will come back with an update once I hear back from our local council regarding my daughter’s bus pass. I am finding organizations from Blue Chip Companies to Government Offices either are not fully trained when it comes to the consequences of their actions. A person who is relapsing does not want added stress to further make their illness any worse and God forbid become bedridden.

I have been on the Cardiff Council Travel Website: https://portal.tfw.wales/en/disabled There is no page that says for customers to appeal. I then proceeded to by phoning them and completely forgot the question I needed for this site (cognitive impairment) 🤣😂 although went on to mention my daughter and the woman I spoke to said that nothing was received from my daughter. She also said it is the council’s decision and not theirs, excuse me you are an agency part of the council.

Cardiff Council email address: travelcards@tfw.wales

Cardiff Council phone number: 03003 034 240 Monday to Friday: 09:00 – 17:00

Evidence shows that stress can be a contributing factor to causing relapses in Multiple Sclerosis patients, which can have a bidirectional relationship.

UPDATE 05/07/22

Email Received 05/07/22

Email Content.

Hope you are well.  

I regret to inform you that unfortunately, your daughter does not qualify for the Disabled Concessionary Bus Pass. As an organization, we are only able to approve applicants that score the points specified below on one or more of the following descriptors.  

Department for Work and Pensions (DWP) Personal Independence Payment (PIP) Statement of Entitlement, which shows: Department for Work and Pensions (DWP) Disability Living Allowance (DLA) award letter, which gives details of a Higher Rate Mobility Component (HRMC) award.

8 or more points under Descriptor 7 “Communicating Verbally”; or
12 points under Descriptor 11 “Planning and Following a Journey”; or
8 or more points under Descriptor 12 “Moving Around”.

Please note:  The PIP descriptors and their individual scores MUST NOT be added together. Unfortunately, as an organization, we are unable to carry out individual assessments, however, in this instance, I would recommend getting in touch with your local authority, who will be able to carry out an assessment to clarify if she is eligible for the pass.

Cardiff Council.
County Hall,
Atlantic Wharf,
Cardiff,
CF10 4UW.
Tel – 02920 872087 

Hopefully, this gives some reassurance that there are options that you are able to explore

Kind regards

Leila Rad-Andrews

My Comments.

The above email is inaccurate because the last time my daughter had an assessment was in 2018 and since then she has lapsed twice. My daughter has since done an online assessment test which states she has between 15 & 19 points.

Despite sending in multiple emails including my daughter’s PIP award they have had the audacity to decline my daughter a bus pass.

She is currently in hospital having Lemtrada Alemtuzumab treatment for her Multiple Sclerosis as she has relapsed and this is causing her unnecessary emotional distress which could lead to further relapses.

https://www.everydayhealth.com/hs/living-better-with-ms-guide/triggers-that-can-cause-ms-flares/

https://disabledentrepreneur.uk/zenas-online-journal-alemtuzumab/

“If it is found that my daughter relapses again because of the stress this is causing her, somebody should be held responsible”.

Update 07/07/22

As my daughter’s carer, I am shocked at how I have been given the runaround. Transport for Wales wrote to both my daughter and me in an email stating that she was not entitled to a bus pass because she did not have enough points.

I explained since the last assessment she has since relapsed and just come out of hospital for her treatment yesterday. So any changes will not be reflected. It is as if the arse does not know what the elbow is doing because when I phoned the number that ‘Transport For Wales’ gave me (which was the switchboard for Cardiff City Council) I was then re-directed back to ‘Transport For Wales’ who told me it was Cardiff City Council Hub-Team that I needed to speak to. I then phoned the number again and was told I had to phone 02920871071 which I did, who then told me I had to speak with the Library. I spoke with the hub/library two days ago and I was sent out an application form even though my daughter already filled one in?

We have submitted all the relevant information by email and we are simply getting the runaround. I finally got an email address advicehub@cardiff.gov.uk yet the hub two days ago said they do not have email addresses, yet today the number I phoned told me to go to the library (as if I am going to shut down my business to take time out is hilarious and beyond unbelievable 😂🤣)… and miraculously they found an email address 😂🤣.

According to ‘Transport For Wales’, my daughter is ‘NOT DISABLED ENOUGH’ to be entitled to a bus pass, even though she has ‘MULTIPLE SCLEROSIS’ and has relapsed.

My Daughters’ PIP Test States She Has 15 -19 Points: https://disabledentrepreneur.uk/zenas-pip-self-test/ contrary to her last assessment that was done a few years ago and since then she has relapsed twice and has just finished treatment. https://disabledentrepreneur.uk/zenas-online-journal-alemtuzumab/

I said in mid-flow of the conversation that this is to do with Government purse strings and the guy I spoke to had not got a clue what I was talking about (I have no words 😂🤣 ).

The criteria are as follows:

(One needs twelve points to qualify).

What the points criteria do not mention is:

(Conveniently)…

Do you experience:

  • Stress
  • Anxiety
  • Depression
  • Suicidal Thoughts
  • Intrusive Thoughts
  • Cognitive Impairment
  • Loss of Balance
  • Insomnia
  • Experience Pain
  • Numbness
  • Experience Light Headiness
  • Confusion
  • Lack of Concentration
  • Social Disconnection
  • Forgetfulness

I will update you once again once I get a response from the Advice Hub.

“I dread to think about what the stress could potentially do to someone with progressive autoimmune disease”.

I could feel myself blowing a gasket never mind someone with multiple sclerosis who has literally come out of hospital for treatment because of a relapse.

If you have any questions or need to be steered in the right direction do drop us a line using the form below:

#disabilitybuspass #discretionerybuspass #freebuspass #buspass #mobility #transportforwales #multiplesclerosisstress #multiplesclerosis #MS #multiplesclerosisresplapse

British Gas Meter Readings.

British Gas Meter Readings.

Warning: Reality Check for Utility Providers, the whole of the UK is not going to be using the same amount of Gas or Electricity prior to the Price Hikes and therefore do not go by past usage and only go by current usage moving forward. British Gas is purposely putting people in debt.

As a lot of our loyal readers already know I had a bit of a ding dong with British Gas the other day, so bravely today I decided to give them another call. https://disabledentrepreneur.uk/chris-oshea-ceo-of-centrica-and-british-gas-earns-775k-whilst-the-vulnerable-suffer/

Excited at the fact that I had only used 8 units in the last two weeks which equates to £20.07, according to the customer service advisor I spoke to today, yet my payment plan has not changed and is still asking for £190 per month even though I am going to be using £40 worth of Gas moving forward. (See screenshots of my meter readings below).

According to ‘British Gas’, they calculate past data of usage and I have said in the past I had my central heating on 24/7 other than the summer months, but I am going to be using the bare minimum moving forward.

It was like talking to a brick wall and I have been told that perhaps the payment plan would be adjusted in 6 months but not before. This is forcing people to go into debt.

So hypothetically speaking, if my predicted usage will be £40 per month moving forward x 6 months left of this year which would equate to £240 but British Gas wants me to pay £190 per month x 6 months which equates to £1,140, minus what I owe = £368 & usage £240 gives a final total of £532 overpayment.

I suppose the surplus money in their bank making interest is better than it is in yours.

Now the way my plan has been calculated is for the past years’ usage rather than usage in the future even though I have proved it will be lower as I do not plan to cook, use hot water or turn the central heating on.

So today I am still nowhere near closure and it is causing me considerable distress. https://disabledentrepreneur.uk/emotional-distress-compensation/

If what I owe is £368 and say next month’s bill comes to £40 per month based on my new meter reading on the (15/06/22) x 3 months = £120 + £368 = £488 that I would owe and if British Gas wants £190 x 3 months = £570, that would mean I would overpay £82.00

Yet they are saying “the computer says no” scenario ‘Little Britain’ quote.

I also asked the question today about what support they have for mental health and the vulnerable and this is what I was told:

  • A payment plan (which we cannot agree on and they refuse to spread over 36 months but in the past they have). This is intimidation.
  • A pre-payment meter (that is for people who cannot pay on time and I refuse to have one for health reasons – read the following: https://disabledentrepreneur.uk/how-safe-are-smart-meters-for-your-health/
  • The Charity ‘British Gas Trust’ is a joke and I would not waste time donating or asking for donations because British Gas does not support the vulnerable, (notice I am not giving this company a backlink in this article).
  • Contact Stepchange which is a third-party charity and is not exactly supported by British Gas, they give financial advice because I advertise Stepchange.org on my useful links page.

So their support for me personally is as useful as a chocolate fireguard.

It was further confirmed that British Gas does not support people with Mental Health other than what has been mentioned above.

This is how condescending companies are because I did not agree to the £190, British Gas expects me to get financial advice “hello, is anyone listening? I do not need financial advice”. I know what my usage is going to be moving forward.

This is what Citizens Advice says: https://www.citizensadvice.org.uk/consumer/energy/energy-supply/get-help-paying-your-bills/getting-extra-support-from-your-energy-supplier/ May I also add nothing in the following PDF was offered to me other than what I have listed above.

How-energy-companies-can-support-people-who-are-struggling-this-winter_-good-practice-guide-for-energy-suppliers-and-networks-V.6-March-21

I also stated I need to keep my home warm in the winter months to prevent black mold from growing as my daughter has Multiple Sclerosis (MS) and if I cannot afford to pay the astronomical prices British Gas’ is charging and I fail to turn my heating on which would cause a domino effect and my daughter relapsed from the ‘Black Mold Spores’, then someone would have to be held accountable.

Like I said in my article yesterday “if you do not have the extra money, to begin with, how are you supposed to find the extra money to pay the greedy corporate companies that make a profit on the back of your vulnerabilities”?

Below are screenshots of the meter readings.

Meter Reading 31/05/22

Meter Reading 15/06/22

When I pay this company off I am going to switch providers and not recommend this provider to anyone. If any utility company refuses to spread the costs with affordable payment plans and is unreasonable with zero support for your disabilities then you should take action.

They should at least offer you breathing space to give you the time to find the money. I have proven with photographic evidence that my usage is now going to be lower.

I begrudge helping a company that makes money off me or anyone else in a vulnerable position and who is disabled. If I thought any company was worth a good review and marketing I would consider partnering with them, but I do not in this case because they have caused emotional distress which in turn has made my mental health worse.

#britishgas #britishgasmeterreadings #paymentplans #mentalhealth #mentalhealthsupport

Black Mold & Multiple Sclerosis Connection.

New Study Shows Mold Triggers Brain Inflammation and can cause Multiple Sclerosis.

Black mold is dangerous and living in conditions where spores are present can lead to serious health conditions. Often people do not put two and two together and realize that their health has declined to poor living conditions.

Estimates vary, but in the US studies have shown up to 85 percent of building inspected had past water damage.

A new study found that people affected by mold illness experienced:

  • Brain inflammation in the hippocampus is the area of the brain that governs memory, learning, and the sleep-wake cycle.
  • Decreased neurogenesis, or the formation of new brain cells.
  • Impaired memory.
  • Increased sensitivity to pain.
  • Increased anxiety.

https://carolinatotalwellness.com/blog/index.php/2020/01/13/new-study-shows-mold-triggers-brain-inflammation/

Can dampness and mold affect my health?

The presence of mold in your home most definitely can cause you to become chronically ill. Dampness and mold are more likely to cause respiratory problems and autoimmune disorders as well as respiratory infections, allergies, or asthma.

Damp and mold can also affect the immune system which can cause multiple sclerosis and other immune disorders.

Who’s affected?

Some people are more susceptible than others, including:

  • babies and children
  • elderly people
  • those with existing skin problems, such as eczema
  • those with respiratory problems, such as allergies and asthma
  • those with a weakened immune system, such as those having chemotherapy, Lemtrada Alemtuzumab.

These people should stay away from dampness and mold.

How does it affect your health?

Molds produce allergens (substances that can cause an allergic reaction), irritants, and, sometimes, toxic substances.

Inhaling or touching mold spores may cause an allergic reaction, such as sneezing, a runny nose, red eyes, and skin rash. Molds can also cause asthma attacks.

By coincidence, asthma is something the tenant below me suffered from before moving out and ironically my daughter has been diagnosed with Multiple Sclerosis. I highly doubt this to be a coincidence.

Causes of damp and mold

Mold and dampness are caused by excess moisture, such as poorly heated homes, and old houses. Moisture in buildings can be caused by leaking pipes, rising damp in basements or ground floors, or rain seeping in because of damage to the roof or around wooden window frames, which are single-glazed.

“So when the gas company stated I use more gas than the average household, it is to try and keep my home warm to stop the condensation from forming more mold which is a health hazard”.

Simply saying wash it down with hot soapy water and bleach it, is just a temporary measure because it will eventually come back. Besides the spores can be airborne and you may not necessarily see you have a problem until they start growing on your walls, windows, and furniture.

A newly built home may be damp if the water used when building it is still drying out – for example, in the plaster on the walls.

Excess moisture indoors can also be caused by condensation. Having your landlord tell you to open a window to release the condensation is not practical especially if it is cold and raining outside and in the winter months.

You must access where the mold or dampness is coming from and why you have excess moisture in your home. When you know what’s causing the dampness, you can make sure your home is repaired or take steps to limit the moisture in the air.

Remember if you live on a rented property, always take photographs of the mold and the damage to your personal belongings. This is particularly important for litigation evidence.

When removing the mold listening to your landlord advising you to wash it down with soapy water is a health hazard because he/she is telling you to deal with the problem rather than him/her dealing with it themselves.

If you have been diagnosed with autoimmune disease whilst living in a property covered with black mold there may be grounds to sue your landlord/lady, especially if you have made them aware of the issue and they have done nothing about it.

If the area of the mold is large you may need to get a professional to remove the mold for you, but if it’s only a small amount you may be able to remove it yourself, providing you are in good health. if your landlord/lady insists you deal with the mold by washing it down with bleach and soapy water and they are aware you have health issues you have grounds for litigation.

https://www.nhs.uk/common-health-questions/lifestyle/can-damp-and-mould-affect-my-health/

Invasive Mold Infections

People, especially those with weakened immune systems, can develop invasive mold infections days to weeks after exposure to fungi that live in the environment.

Exposure to indoor mold that grows as a result of water damage may increase this risk.

These infections are:

  • Rare
  • Typically caused by Aspergillus, but can also be caused by other types of mold, such as mucormycosis
  • Difficult to diagnose
  • Often life-threatening

Risk Factors

These include people who:

  • Have had a transplant, especially hematopoietic stem cell transplants
  • Have cancer, especially hematologic cancers like leukemia and lymphoma
  • Are undergoing cancer treatment (chemotherapy)
  • Are taking medications that weaken the immune system, such as corticosteroids and biologics

Signs and Symptoms

Signs and symptoms can vary depending on the patient, the type of mold, and the part of the body affected, but often include the following:

  • Fever
  • Cough
  • Night sweats
  • Weight loss
  • Shortness of breath
  • Sinus symptoms
  • Dark scabs, blisters, or ulcers on the skin
  • Autoimmune Disorders
  • Brain Inflammation
  • Asthma
  • Skin Problems such as eczema
  • Respitorary problems

Diagnosis and Treatment

Diagnosing an invasive mold infection requires multiple diagnostic tests. The results of these tests should be interpreted in the context of each specific patient. These tests include:

  • Culture of specimens from the affected area (such as bronchoalveolar lavage [BAL]), which is often used to detect lung infections)
  • Biopsy of the suspected body part affected to obtain a sample for fungal culture and histopathology
  • Imaging of the affected part of the body (e.g., chest computed tomography [CT] for respiratory symptoms)
  • Blood tests (such as Aspergillus galactomannan), which are primarily used in immunocompromised patients

Starting treatment early can help prevent deaths.

Treatment includes antifungal medications and, in some cases, urgent surgery.

Consider consulting an infectious diseases specialist to help with diagnosis and treatment.

Prevention and Patient Resources

After major flooding or other exposure to water damage and mold, talk with your immunocompromised patients about how to protect themselves from mold:

  • Mold grows where there is moisture, usually within 24-48 hours of flooding. Even if it is not visible, it is often present.
  • Immunocompromised people should not enter moldy buildings or help clean up the mold.
    • If it is impossible for people with weakened immune systems to avoid a moldy building, they should talk with their doctor and consider wearing an N-95 respirator inside the building. Remind patients that this will still not fully protect them from becoming exposed to mold, but may reduce their risk.
  • If there is mold in your patient’s home, someone who is healthy and able should clean it up and fix any water problems.
  • Healthy people who clean up mold or spend time in areas affected by mold should wear full protective clothing including an N95 respirator, gloves, boots, long pants, and long sleeves. An N95 respirator alone may not fully protect people from becoming exposed to mold and becoming sick.

https://www.cdc.gov/mold/invasive-mold-infections.htm

#risingdamp #blackmold #dodgylandlords #treatingblackmold #backmoldandmultiplesclerosis #multiplesclerosis #braininflammation

Stress & Cognitive Function.

Photo Credit Pixabay : Geralt
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Stress & Cognitive Function.

Psychological stress can affect a person’s cognitive abilities, in the short term (e.g., when an individual’s thoughts are pre-occupied with an argument or problem that happened earlier in the day resulting in reduced ability to concentrate) as well as over the long term, where the intrusive thoughts creep in and the problem simply does not go away and festers, which in turn can lead to anxiety, depression and other mental health disabilities.

Emotional and cognitive changes

The emotional and cognitive effects are often the greatest challenges. Some of the most common symptoms can be hidden from plain sight. These changes can affect the way people feel about themselves and alter their cognitive functions. For many, the emotional and cognitive effects represent the greatest challenges.

Emotional changes

Uncertainty, stress, and anxiety, depression are the most common disorders a person can experience.

A person with an autoimmune neurological disease such as MS or Cerebellar Atrophy may grieve for their life before they were diagnosed with a disorder. Other emotional changes that may occur include clinical depression, bipolar disorder, and mood swings. All of these are more common among people with MS than in the general population. Depression and bipolar disorder require professional attention and the use of effective treatments.

Emotional lability appears to be more common, and possibly more severe, in people with MS and Mental Health Disorders. This may include frequent mood changes, for example from happy to sad to angry.

It is believed that the causes are the extra stress brought on by MS as well as neurological changes. Uncontrollable laughing and crying is a disorder affecting a small proportion of people with MS, and it is thought to be caused by MS-related changes in the brain.

Low self-esteem

Having MS can affect self-esteem. There may be times when it’s difficult to do everything a person is used to doing, or they may have to do things differently. Focusing too much on the negative aspects can feel overwhelming.

Cognitive changes

Cognition refers to the “higher” brain functions such as memory and reasoning. About half of all people with MS will not experience any cognitive changes, but for others, the most commonly affected aspects of cognition are:

Memory

Attention and concentration

Word-finding

Speed of information processing

Abstract reasoning and problem solving

Visual-spatial abilities

Executive functions

Studies have shown according to author Dr. Sudha Seshadri, professor of neurology at UT Health San Antonio explains that higher levels of stress translate into raised levels of the stress hormone cortisol in the blood. A raised level of cortisol in the blood can predict brain size, function, and also the performance of the individual when faced with cognitive tests. She said, “We found memory loss and brain shrinkage in relatively young people long before any symptoms could be seen.” It’s never too early to be mindful of reducing stress,” she added. The lead author, Dr. Justin B. Echouffo-Tcheugui, an assistant professor of medicine at Johns Hopkins also said that symptoms of stress-related memory loss and brain damage may not be evident until much damage has already been done.

Cerebellar Atrophy & Stress.

The cerebellum is connected with stress-related brain areas and expresses the machinery required to process stress-related neurochemical mediators. Surprisingly, it is not regarded as a substrate of stress-related behavioral alterations, despite numerous studies that show cerebellar responsivity to stress.

https://pubmed.ncbi.nlm.nih.gov/31348932/

Notes From The Editor.

“I suffer from cognitive impairment, I lose my balance, jumble my words, and have memory loss. The condition I have is cerebellar atrophy. I was diagnosed with it around 2011”.

The more stressed I am the less I want to do. I sometimes have to force myself to churn the wheel for another day.

I suffer from clinical depression and have been diagnosed with this over 30 years ago. There are days that I have to fight with my thoughts in order to get through the day.

Recently with the price hikes, my depression is getting worse. I have my voice mail turned off and my phone is on airplane mode constantly. I cannot deal with talking to people over the phone. To counteract this I much prefer email correspondence. I am not too good with letters especially forms because of my OCD, this is something else I suffer with.

Having people pity me and say things “Awh Bless” or “Poor You”, really gets my back up. It is condescending. Furthermore, people are quick to judge or assume.

The difference between someone who is self-employed and someone who is employed is that the employed person is a slave to their employer and has a guaranteed wage, whilst the self-employed do not have a guaranteed income stream. A disabled person may choose to work for themselves as they do not have the same amount of pressure or obstacles to overcome.

I spoke with a British Gas customer rep the other day and she started asking questions, such as do I have a carer, and when I said no, I could hear her brain ticking and assuming that I am making things up about my illness. I tried explaining if I get stressed my mental state shuts down and I go into a whirl of depression. I continued to say that yanking my gas bill from £65 per month to £90 and a further hike to £138 was simply unacceptable. I simply cannot get this sort of money out of my a##e. I ended by saying I won’t be able to work because I cannot cope with the stress this is causing me. Now wait for the assuming bit she replied “what do you mean you will not be able to work, what do you do”? I said “I am the editor of “Disability UK Journal”. There was silence and then her attitude changed.

“A person who is self-employed and becomes unwell cannot function or keep their business running. So if they do not work no money comes in”.

“Just because I run this disability journal does not mean I am rolling around in money. Never assume anything”!

I am not a charity and I have no funding, I simply rely on Advertising & Marketing Revenue”.

Never assume because someone is working, they are financially secure or they do not have disabilities, or if they have they must not be all there especially when they have mental health disorders”.

There is so much stigma attached to disabilities with small-minded people judging and assuming things. Just because someone may have a disability does not make them less capable than the next person (depending on certain factors and disabilities of course), they may in fact do a better job.

“A disabled person can be more intelligent than you, so never assume that they are not”.

Elon Musk for example has ADHD and suffers from Asperger’s syndrome and is the richest man in the world.

https://disabledentrepreneur.uk/category/famous-entrepreneurs-with-disabilities/

https://www.disabilityscoop.com/2021/05/10/elon-musk-says-he-has-aspergers/29332/

Further Reading:

https://www.msif.org/about-ms/symptoms-of-ms/cognition-and-emotional-changes/

https://www.news-medical.net/news/20181025/Stress-can-cause-memory-loss-and-brain-shrinkage-finds-study.aspx

#disabilityuk #disabledentrepreneur #multiplesclerosis #mscongintivefunctions #cognitivefunctions #stress #anxiety #judging #assuming #selfemployed #disabledselfemployed #depression

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Zena’s Online Journal Listeria Diet

As most of you know I have had an (MS) Multiple Sclerosis Relapse and am due to have my treatment ‘Lemtrada Alemtuzumab’ any day now. I have been told I have to start a ‘Listeria Diet’. It does not help when I have been told this a few weeks ago after I signed the consent form, especially as they know that “stress can cause MS relapses” and I am getting more and more stressed and anxious waiting for the start date.

https://www.msif.org/about-ms/symptoms-of-ms/cognition-and-emotional-changes/

My life should not revolve around the NHS pussy footing around.

It is getting beyond a joke waking up every morning to see if I have received the letter or not.

The Professor of Neurology and the MS Team should know better than to make a patient become stressed.

If you do not know what Listeria is here are some facts:

Listeria is a genus of bacteria that acts as an intracellular parasite in mammals. Until 1992, 10 species were known, each containing two subspecies. By 2020, 21 species had been identified. The genus is named in honor of the British pioneer of sterile surgery Joseph Lister.

It’s a harmful bacterium that can be found in refrigerated, ready-to-eat foods (meat, poultry, seafood, and dairy – unpasteurized milk and milk products or foods made with unpasteurized milk), and produce harvested from soil contaminated with L. monocytogenes.

Many animals can carry this bacterium without appearing ill, and thus, it can be found in foods made from animals. L. monocytogenes is unusual because it can grow at refrigerator temperatures where most other foodborne bacteria do not. When eaten, it may cause listeriosis, an illness to which pregnant women and their unborn children are very vulnerable (autoimmune disease) with low immune systems.

Citation: https://en.wikipedia.org/wiki/Listeria

My diet:

Can’t eat:

  • Hot dogs, deli meats, and luncheon meats – unless they’re reheated until steaming hot. Greggs, McDonald’s, Subway.
  • Refrigerated Meal Deals, Pre-prepared sandwiches, and salads. Tesco’s Meal Deals, Boots Meal Deals, Sainsbury’s, Morrison, Cafe Food such as Starbucks, Costa-; Cafe Nero, Coffee #1, etc.
  • Soft cheeses like Feta, Brie, and Camembert, “blue-veined cheeses,” or “queso Blanco,” “queso fresco,” or Panela – unless they’re made with pasteurized milk. Make sure the label says, “made with pasteurized milk.”
  • Refrigerated pâtés or meat spreads, lunch meats like cold cuts, chicken liver.
  • Refrigerated smoked seafood – unless it’s in a cooked dish, such as a casserole. (Refrigerated smoked seafood, such as salmon, trout, whitefish, cod, tuna, or mackerel is most often labeled as “nova-style,” “lox,” “kippered,” “smoked,” or “jerky.” These types of fish are found in the refrigerator section or sold at deli counters of grocery stores and delicatessens), Sushi; is sold in grocery shops, cafes, and restaurants.
  • Raw (unpasteurized) milk or foods that contain unpasteurized milk, ice cream, and cheese made from raw milk.
  • Raw or lightly cooked sprouts, including alfalfa, clover, radish, and mung bean sprouts
  • Pre-prepared fruit including cut melon at room temperature, or refrigerated melon that has been cut for more than 7 days (This sucks as I love melon). If you are wondering why there is an emphasis on melons, this is what I found: Most melons are grown on the ground. The ground is dirty, but the rind protects the inside of the melon. The problem is that germs like E-coliListeria, or Salmonella can sometimes hang out on the rind. Some melons have E-coli hovering around the outside of the melon. In most cases, the E-coli germs don’t do too much to the rind of the melon. It’s the cutting of the melon that can cause the problem. https://www.canr.msu.edu/news/melons_prepare_and_store_properly_for_safe_consumption
  • Rare or undercooked beef, poultry, pork, and lamb. (No rare or medium-rare steaks I’m afraid).

It’s okay to eat:

  • Pasta cooked fresh. Can be reheated at 165%F.
  • Casseroles. Can be reheated at 165%F.
  • Freshly Cooked Rice and Curry.
  • Fried Food. (This kills germs but does nothing for your waste line). (KFC is not permitted because the fried food is not sold immediately it leaves the fryer, and sits on trays. The same goes for burgers the salad sits around and cheese is not permitted).
  • Freshly baked or roasted food. (Jacket Potatoes, Roasted Meat).
  • Canned Soup & Beans.
  • Pasteurized milk or foods that contain pasteurized milk.

https://www.lemtrada.com/stories/experiences-articles/food-safety-during-ms-treatment

Not only do you have to watch what you eat you also have to have a germ-free environment and make sure your fridge, work surface areas, and your utensils are clean and sterile.

Time to Chill

  • Your refrigerator should register at 40° F (4° C) or below and the freezer at 0° F (-18° C). Place a refrigerator thermometer in the refrigerator, and check the temperature periodically. During the automatic defrost cycle, the temperature may temporarily register slightly higher than 40° F. This is okay.
  • Refrigerate or freeze perishables, prepared food, and leftovers within two hours of eating or preparation. Follow the 2-Hour Rule: Discard food that’s left out at room temperature for longer than 2 hours. When temperatures are above 90° F (32° C), discard food after 1 hour.
  • Use ready-to-eat, perishable foods, such as dairy, meat, poultry, seafood, and produce, as soon as possible.

Fridge TIPS

  • Clean your refrigerator regularly.
  • Wipe up spills immediately. (Have antibacterial wipes on hand or antibacterial surface spray.
  • Clean the inside walls and shelves with hot water and a mild liquid dishwashing detergent; then rinse. (I always use fairy antibacterial with a red cross washing up liquid.
  • Once a week, check expiration and “use by” dates; and throw out foods if the date has passed. Follow the recommended storage times for foods.
  • Remember to store raw meat on the bottom shelf and cooked meats on the top/middle.

Food Storage:

Symptoms of listeriosis

In most people, listeriosis has no symptoms or only causes mild symptoms for a few days, such as:

  • a high temperature of 38C or above
  • aches and pains
  • chills
  • feeling or being sick
  • diarrhea
  • death

If you’re pregnant, you may also have a stomach ache or notice your baby moving less than usual.

Babies with listeriosis may also be irritable and feed less than usual.

Risks of listeriosis

Listeriosis is not usually serious for most people.

But some people have a higher risk of serious problems, including:

  • people who are pregnant
  • newborn babies
  • people aged 65 or over
  • people with a condition that weakens their immune system, such as cancer, liver disease, or kidney disease
  • people having treatment that weakens their immune system, such as chemotherapy or steroid tablets
  • people with diabetes who are unable to keep their blood sugar level down, even with treatment (uncontrolled diabetes)

If you get listeriosis while you’re pregnant, there is a risk it could cause miscarriage or stillbirth.

I have made the keywords in bold that apply to people who are having treatment for “multiple sclerosis”.

I have also attached links to the Lemtrada Alemtuzumab, NHS, and FDA sites for further reading.

https://www.lemtrada.com/

https://www.nhs.uk/conditions/listeriosis/

https://www.fda.gov/food/foodborne-pathogens/listeria-listeriosis

#multiplesclerosis #ms #mstreatment #listeriadiet #fdalisteriadiet #nhslisteriadiet

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