Motor Neuron Disease (MND)- Status & Blog

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MND Patient

MND DIAGNOSIS

New MND Patient Story -

Including Doctors visits & Hospital visits it has taken over a year to reach the MND Diagnosis below for the new patient

 

May 2015 Occasional trip over

Physiopherapy suggested Dropped Foot

Doctor diagnosed a Dropped Foot

Orthotics Support Strap to prevent falling over worked

 

June 2015 Deep Vein Thrombosis Test after long flight - Test  Negative

X Rays to check if any Bones in foot / ankle broken - Test Negative

 

28 April 2016 MND Specialists then Professors MND Clinic Diagnosis was MND expected cause Genetics Coding Damage Inheritance

Genetic Test proves Genetic Code Damage

 

MND Clinic Specialist Nurse & GP sumitted DS1500 Fast Track Top Priority Form for ND Priorities, benefits & entitlements

 

It has  taken over 3 months to getr a Blue Badge.

Paper form application kept by Post Office as Council Blue Badge Dept would not accept it or sign for it. Post office returned it to us 2 months ater.

Blue Badge online application no progress for 1 month until personal telephone calls & visit to the Council explaining MND & DS 1500 to the Blue Badge Dept who stated no acceptance of DS 1500 only fast track top priority for those with 12 months or less to live the Blue Badge is valid for 1 year.

Otherwise MND Patients wait for up to 3 months or more  with every other aplication for Blue Badge for 3 years

Negotiation by telephone calls & visit to Blue Badge Dept explaining fast track & DS 1500 resulted in special circumstance being applied & a week later we received the Blue Badge

 

Personal  Independence Payment (PIP) It has taken 3 months to get PIP - It was backdated but this only happend by personal  telephone calls explainingMND & ds 1500 then the PIP was issued

 

Mobility Assistance Equipment NHS (free hire) immediate progress & useful practical mobility assistance equipment which can be changed

 

Mobility assistance for home - it took 3 months for someone to visit us at home then an assessment form was issued

State Benefits telephone call from Council Citizens Advice. Personal financial limit means test limit less than £23,000 in savings - savings above limit.

May qualify for Grant as this is not means tested but is based on the patiens needs. Council pays if provenneed & patient pays a proportion of the cost.

 

Approved & tested drug Riluzole not a cure but recomended to help slow up MND condition.Had to wat for prescription from professor to GP.

 

17 June 2016 Prescription agreed & Riluzole to start. Drug effect on patient was extreme drousiness, lathargy, start of depression& less mobility. Patient does not have to take drugs so stopped &  experienced a significant improvement in all the symtoms & returned to normal.

 

MND Clinic additional Blood Tests for Genetic Research. Possible trials with new drugs.

 

23 June 2016 Final Daignosis - Genetic Test for most common hereditory MND Expansion in Gene C9orf72 is positive

 

MND Patient gave blood & physically tested for research & registered for MND notifications & research trials involving MRI scans, spinal fluid tests for biomarkers using needle for extraction (Lumber Puncture) 3 times & was unable to get a fluid sample,Genetic Testing -  continued particiapation is not compulsary

 

August onwards to write letters / e-mails to famous people with MND or variants, Politicians, high profile people, Universities, Hospitals, Research & people with new ideas in the UK & Worldwide.

 

11 August 2016 Patient attended Respiratory Dept at The Churchill Hospital, Oxford for tests. Test results good & no problems, next check in 3 months. Sent home with respiratory equipment consisting of an Oxygen filling plastic bottle with a one way valve face mask in case of future infections to enable clearing  lungs by coffing.

 

26 August 2016 Patient attended researchat the MND Research Dept at the Churchill Hospita, Oxford

 

November 2016 Patient & partner given Flu virus & Pneumonia virus injections at the same time one per side. Both fighting to breathe afterwards & in a state of panic

 

November 2016 Patient fell backwards went to Hospital - Doctors stated fall due to to virus reducing Oxygen level - Cracked Rib -  examination revealed

previous shoulder blade damage fro a previous fall

 

November 2016 partner got a virus causing severe cough & unable to breathe, gasping for air - Patient then got same virus causing same cough & unable to breathe - Concern that patient may now have respiratory damage - Churchill Hospital contacted - No reply - Contacted Respratory Clinic direct - No action referred to J R Hospital MND Clinic

 

New MND Patient Story - Includes Doctors visits & Hospital visits - It has taken over a year to reach MND Diagnosis below for the new patient

 

 

1 June 2016

Hello World!!

Lets connect together worldwide to eliminate MND & other diseases. Lets get a proven cure by involving everyone including people with new ideas, preople with an interest in MND, people with spare money to donate. If we do this the future is bright. Who knows what the future will be. Remember the Hypocratic Oath & give hope. Anyone can be affected directly or indirectly. It is time for change & new ideas. The cure is long overdue.