Category: Useful Links

What is Multiple Sclerosis (MS).

Amongst my knowledge of OCD and Cerebellar Atrophy I have been thrown into the deep end with Multiple Sclerosis. The reason for this, my daughter was diagonosed with it at the age of 15. It was a shock to the system for the both of us to learn about the disease, the diagnosis and what treatments there were and what are available.

At the time my daugher was put on Lemtrada (alemtuzumab).

I had concerns when I read that the treatment was still going ahead even though European Medicine Agency (EMA) had taken it off the market. The hospital and EMA said that no new patients would be having to drug but the patients already on it would have to finish the course.

RED TAPE!

I personally think there was political red tape and that is the reason the drug had to be continued with existing patients as it cost too complicated to get a refund, I may be wrong but no one has stepped up to correct me.

https://www.ema.europa.eu/en/medicines/human/referrals/lemtrada

Lemtrada suppresses the immune system for some time after a treatment course so people will be more vulnerable to infections such as colds and viruses.

LEMTRADA can cause serious side effects including:

Serious autoimmune problems:

Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death.

Serious autoimmune problems may include:

  • Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems.
  • Call your healthcare provider (HCP) right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
  • Kidney problems called anti‑glomerular basement membrane disease, which, if not treated, can lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death.
  • Call your HCP right away if you have any of the following symptoms: swelling of your legs or feet; blood in the urine (red or tea‑colored urine); decrease in urine; fatigue; coughing up blood.

So its no suprise that On July 3, 2020 Sanofi Genzyme was notified that Lemtrada Home Phlebotomy Partner, Examination Management Services Inc., (EMSI) has gone out of business.

https://www.lemtrada.com/

Because of this, unfortunately, all future Lemtrada Home Phlebotomy (lab draw) visits from EMSI have been cancelled.

Patient safety is Sanofi Genzyme’s #1 priority (thats a joke if I ever heard one as my daughter was still administerd the drug after the EMA said it was unsafe) and they continued to say they are working to provide an alternative phlebotomy solution as well as coordinate alternative testing options for your next monthly lab tests.

This tells me that the company had to do refunds and the NHS here in the UK were slow and had already paid the doctors.

I wrote an article on my other blog how Doctors get a commission from pharmaceutical companies for promoting drugs.

You can read the article here:

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

Doctors receiving money from pharmaceutical companies.

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

I personally think when I first learnt about this that I was angry that the NHS knew the risk, yet used my daughter as a lab rat.

If you have any questions related to this announcement, please contact your healthcare provider or your One to One Nurse at (USA) 1-855-557-2483.

If you are in the UK contact your MS Team, or speak to the Ward Manager or Professor assigned to your case.

Multiple sclerosis (MS)

Multiple Sclerosis is an auto-immune disease that attacks healthy white cells. The lesions that can affect the brain and spinal cord can cause a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

It is an incurable disease with lifelong symptoms that can sometimes cause serious disability, although it can occasionally be mild.

The average life expectancy is slightly reduced for people with MS and symptons can be alliviated with different courses of treatments.

In most cases people get diagnosed in their 20s or 30s but it has been know the patients have showed symptoms as young as 15 years old. In fact it can develop at any age. It’s about 2 to 3 times more common in women than men.

MS is one of the most common causes of disability in younger adults.

https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/

The most common symptoms include:

Cerebellar atrophy

Cerebellar atrophy is associated with MS and is more extensive in patients with secondary progressive MS and those with longer disease duration when compared with people who have relapsing–remitting (RR) MS and/or shorter disease duration. Cerebellar atrophy has been shown to correlate with clinical measures of disability.

Multiple sclerosis (MS) commonly affects the cerebellum causing acute and chronic symptoms. Cerebellar signs contribute significantly to clinical disability, and symptoms such as tremor, ataxia, and dysarthria are particularly difficult to treat.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3281565/

For Further Information Contact the Following Links.

https://www.nhs.uk/conditions/multiple-sclerosis/

https://www.nationalmssociety.org/What-is-MS

https://www.mssociety.org.uk/

https://www.webmd.com/multiple-sclerosis/default.htm

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487391/

https://jnnp.bmj.com/content/88/12/1065

https://journals.physiology.org/doi/full/10.1152/jn.00245.2018

Clinical Depression.

What is depression.

Depression is a feeling we have which sets our emotions and our moods to be become very low. This feeling can that last for weeks or many months.

Depression is not about feeling sad for a few days it is about the prolonged feeling we cannot shake. Depression is not about being weak. It is a real illness. Depression is feeling persistently sad for weeks or months, rather than just a few days.

Symptoms of depression include the feeling of unhappiness or feeling hopelessness. Our emotions at low levels cause us to have low self-esteem, loose confidence and general interest in every day life. At this level we no longer care about ourselves and what is going on around us. We no longer can focus properly and need to be steered in the right direction.

What is clinical depression.

Clinical depression is the more-severe form of depression, also known as major depression or major depressive disorder. It isn’t the same as depression caused by a loss of a loved one or a medical condition. It is a deep state of a very low self esteem, where you may have thoughts of suicide. This type of depression makes a person feel there is no way out and they simply want to stop themselves from feeling so miserable.

Clinical Depression is a like being in a very deep dark tunnel with no light at the end of it.

What would have made us happy once is no longer enjoyable. Clinical Depression can cause people to go into isolation away from other people. Facing people can be difficult and the avoidance of admitting there is something wrong is lessoned if a person with depression goes into solitary confinement.

People with depression are less likey to answer their phone or socialise. However this can lead to loneliness which can turn into a viscious circle which sometimes a person cannot get out of.

Some people with depression turn to drinking alcohol excessively or using recreational drugs. Some become dependant on prescription drugs that they may abuse.

Depression can be set off by stressful or traumatic events at home or at work or even at School, College or University. Stress could be caused by being put under pressure and the fear of failing or loosing or having lost something or someone.

Self employed people who have jobs that require fast results may under pressure have an overwhelming feeling of fear, sadness and hopelessness. Entrepreneurs have to work even harder to put food on the table unlike a job with a regular wage. An entrepreneur may have the added pressure of paying for all his business overheads, staffs wages and getting more business in before paying him/herself. Some people simply cannot cope and crack under the strain.

Depression could also be caused by the emotion of feeling sad from problems in your personal life with a partner or it could be because of your personality or family history, it could even be from giving birth (Post Natal Depression). Depression could be simply accepted into society or having to be under tremedous amount of strain to pass a test or find your next job. It could be that you have been made redundant and feel your life is crumbling right in front of you. The pressure of paying your bills and your mortgage can sometimes drive a person to breaking point.

There are many reasons why people become depressed it could be financial problems and the fear of your life spiralling out of control. The feeling that perhaps you have no one to turn to.

I have listed useful links below including Samaritans.

Whatever the cause believe it or not, there is a light at the end of the tunnel and there is always someone you can talk to.

It’s amazing how many people are suffering with depression but simply do not know where to turn to or that there are others experiencing exactly the same emotions as you.

Talking to someone always helps and there are may support groups around to help you. Samaritans will talk to you confidentially any time of the day or night 7 days a week. They won’t ask you personal questions or even your name. You can even block your telephone number if it makes you feel better. They will give you ideas and options of how you can get out of the dark spell your under. Remember there is a prblem to every solution, you just need to know where to look.

Nothing can be so bad that cannot be fixed.

Useful Links:

What is Anxiety

What is Stress

What is Depression

Suicide Healthline

SAMARITANS.org

MIND.org.uk

YoungMinds.org.uk

Further reading:

https://www.nhs.uk/conditions/clinical-depression/#overview

https://www.nhs.uk/oneyou/every-mind-matters/coronavirus-covid-19-staying-at-home-tips/

https://www.mind.org.uk/information-support/coronavirus/coronavirus-and-your-wellbeing/

Disabled Entrepreneur

Being a self employed disabled entrepreneur comes with many challenges. One first needs to walk before you can run so starting up as a sole trader and expanding is the most sensible strategy to take. When expanding a business it can be a huge psychological boost to be able to share some of the pressures and the risks with someone else.

Masterting the art of coping under pressure is very important and is a required attribute for any entrepreneur, but for someone who are disabled and have impairment issues that are continuous, or indeed sporadic and unpredictable can effect their health long term. Not being able to manage those pressures and can effect your business and can cause challenges in relation to workflow, planning and client relationships.

Being disabled can affect your emotions and psychological feelings of confidence and motivation.

Finding strategies to overcome obstacles specific to each individual disabled entrepreneur is vital to sustaining your business. Some disabilities are invisible to most people but requires heavy medication and constant management, this can make a person lethargic and react slowly.

When starting out as a sole trader and finding you have too much work to cope with single handily you have to put your health first and off set the work load either by outsourcing or employing people that can help you. Trying to do everything yourself will eventually effect your health even more. Rather than turn away business, decided to expand instead.

Whilst being in demand is flattering, clients who want you one on one as an individual working on their project can pose problems for a disabled entrepreneur. You have to have a critical time path (ctp) and plan your hours carefully. Be transparent from the start and make your clients aware of your disabilities. CEO’s are human after all and they all started out from somewhere once so they should be able to compromise meetings face to face. With working from home being the norm because of ‘Coronvirus Lockdowns’ having virtual meetings via ‘Zoom’ is becoming very popular now a days.

Depending on your circumstances and what type of job you do will depend if you need a public office/shop or not. Most businesses are now transitioning online saving them money in renting office space and business rates.

Some disabilities are unpredictable, one day you may be feeling fine and the next day you are not. Knowing how to work under pressure and to deadlines can be challenging but if for what ever reason you were not feeling up to it one day you can always re-schedule. CEO’s are not Ogre’s, they do understand. Furthermore if you have someone that can help you out and step in can also be beneficial to running a successful business. There are positives as well as negatives to being a self employed disabled entrepreneur.

Having a disability is hugely varied, and so are entrepreneurs’ ambitions. Some might simply want to work for themselves as a one-man-band’s offering a service that makes use of their particular skill, and managing their work hours to accommodate their impairment.

Even with modest goals, the challenges facing a person with a learning disability who wants to set up in business can feel insurmountable without support, there are “too many” barriers that are “distressing and challenging to get the right support needed.”

Getting financial help can be difficult especially if you are a startup and want to get a loan to buy equipment. Most loan companies including banks need to see a business plan and will also need you to show your previous earnings. Some disabled people may have very low or no previous earned income and simply want to be off the unemployed scale. In these cases there are Tax Credits you can claim aswell as Housing Benefit and Council Tax Reductions (Visit your Local Council Website For Help). By setting up a budget for your expenditure you can relatively easily get overdrafts and pay for things using credit cards. Do avoid loan sharks. Also look at grants on the Government website to see if your eligible for a financial scheme.

It is fundemental you have access to a computer and internet to get the relevant help you need in running a business. In order to succeed, having the right information and support, at the right time, is critical for any disabled entrepreneur.

Transportation – Having transport if you have to deliver goods or meet clients is essential. There are private hire cars and logistic companies available including concierge services. There a re plenty of options available that can meet your budget.

By learining how to be confident and brushing up with your communication skills will give your clients and customers a reason to trust you and the product or service you are selling.

If you’re a disabled person running a business, you probably need that extra bit of empowerment and motivation. There is nothing stopping you following your dreams and your dreams will stay dreams unless you find the strength to make your dreams into reality.

SUPPORT LINKS.

***Business Funding:

https://businesswales.gov.wales/coronavirus-advice/support/financial-support-and-grants

***Workplace guidance. Return to work safely. Guidance for employers in Wales.

https://businesswales.gov.wales/coronavirus-advice/workplace-guidance?utm_source=LinkedIn&utm_medium=CPC&utm_campaign=KeepWalesSafeAtWorkGS-LinkedIn-Ad1-English-Square

***Check if you can claim for your employees’ wages through the Coronavirus Job Retention Scheme.

https://www.gov.uk/guidance/claim-for-wage-costs-through-the-coronavirus-job-retention-scheme

***Calculate how much you can claim using the Coronavirus Job Retention Scheme.

https://www.gov.uk/guidance/calculate-how-much-you-can-claim-using-the-coronavirus-job-retention-scheme

Tax Credits.

https://www.gov.uk/browse/benefits/tax-credits

Personal Independance Payments.

https://www.gov.uk/pip

World Mental Health Day

https://www.mentalhealth.org.uk/campaigns/world-mental-health-day

Today we celebrate Mental Health Day with the vision of spreading awareness for this important cause.

Mental Health can be anything from anxiety, and depression to more complex mental health disorders. We all need to stand united and support people where in a lot of cases the disorders are not immediately visible. Not everyone is diagnosed as having a mental health disorder.

Be a good listener to anyone that needs help and wants to talk. Point them in the right direction to get counselling by a professional.

Mental Illness is categorised as having the following disorders:

  1. Anxiety & Panic Attacks
  2. Bipolar Disorder
  3. Depression
  4. Easting Disorders
  5. Obsessive Compulsive Disorder (OCD)
  6. Personality Disorders
  7. Post Traumatic Stress Disorder (PTSD)
  8. Psychosis
  9. Schizoaffective disorder
  10. Schizophrenia
  11. Self Harming
  12. Suicidal Feelings

MENTAL HEALTH LINKS

What is Obsessive Compulsive Disorder

What is Anxiety

What is Stress

What is Depression

Suicide Healthline

SAMARITANS.org

OCDUK.org

MIND.org.uk

YoungMinds.org.uk

https://www.mentalhealth.org.uk/campaigns/world-mental-health-day

FINANCIAL SUPPORT

https://www.gov.uk/browse/disabilities

Useful Disability Support Links

USEFUL SUPPORT LINKS!

USEFUL SUPPORT LINKS FOR DISABLED PEOPLE.

MENTAL HEALTH SUPPORT LINKS

What is Obsessive Compulsive Disorder

What is Anxiety

What is Stress

What is Depression

Suicide Healthline

SAMARITANS.org

OCDUK.org

MIND.org.uk

YoungMinds.org.uk

PHYSICAL HEALTH USEFUL LINKS

https://www.who.int/health-topics/disability#tab=tab_1

GOVERNMENT LINKS

https://www.gov.uk/browse/disabilities

BUSINESS RESOURCES FOR PEOPLE WITH DISABILITIES

https://www.aabrs.com/business-resources-for-people-with-disabilities/