Saturday, 10 March 2018

Guest post: #ThinkHand Campaign for Advanced Multiple Sclerosis

I attended the launch of the #ThinkHand campaign for advanced MS by Barts MS Health at the Bankside Gallery in Southwark on Thursday 22 February.

My MS
I can still walk, but it is a very slow walk and I must use a rollator or walker. I have lost the ability to walk independently. If you fall into this category of disability then there is no drug available from the NHS to slow down the inevitable  progression of MS.

The ability to use my hands and arms is now very important for a multitude of reasons. Without them I could not use a rollator or walker.

A bit of history
All the drug therapies approved by NICE can only be prescribed for early-stage MS known as RRMS. There was a time when I could run, hop, skip and jump but that was a long time ago. It was a terrible shock when I discovered in 2001 I could not even walk in a straight line. In 2004 I was no longer able walk the dog. Now I definitely had SPMS. My consultant who I was seeing once or twice a year was powerless to do anything that might help me.

#ThinkHand Campaign for Advanced MS
The Barts MS Health team are dragging treatment for advanced MS into the 21 st  century. Here are some objectives of their #ThinkHand campaign:

  • Use the 9 Hole Peg Test (9-HPT) as a primary outcome measure in clinical trials to assesses hand function.
  • Give MS patients who cannot walk access to clinical trials
  • Perform a clinical trial for MS wheelchair users. The Chariot-MS Study that uses Cladribine has been proposed.
  • Provide an environmentally friendly 9-HPT so people with advanced MS can monitor their arm and hand function.
     
  • The pharmaceutical industry needs to design clinical trials that are inclusive for people with advanced MS

Awareness
Multiple sclerosis is an incurable disease. There are quite a few drugs that can be given to people to slow down the progress of MS. When the consultant decides that your MS is not the Relapsing Remitting type then you are not eligible for any drug modifying therapy. Just think about that for a moment.

How good is your mobility?
Quality of walking is an indication of the severity of the MS. Long before I needed a walking stick I knew that I was unable to walk along a painted line. I could still run
but my balance was definitely squiffy. If anyone implied that I might end up in a wheelchair then I was selectively deaf. 

Today I can’t walk unaided but also I don’t need to use a wheelchair yet.

Other problems
Now my writing is almost illegible, I can’t type instead I use dictation software.  I have no feeling in my fingertips and it is very difficult to do up buttons. Is my MS better or worse than someone who has to use a wheelchair?

There are too many things you take for granted that I cannot do. The #ThinkHand campaign for advanced MS wants to make people more aware of the impact of advanced multiple sclerosis. Hope and quality of life are important for
everyone.

by Patrick Burke



Patrick was diagnosed with RRMS in 1995 but believes his symptoms started in 1972. The disease turned into SPMS in about 1999/2000. He was forced to take medical retirement in 2012 and set up the website Aid4Disabled in the same year. The website is the story of his MS since retirement and it describes a wide range of objects that are readily available for disabled people to improve their quality of life. Patrick is also a member of the Barts MS Advisory Group.

1 comment:

  1. Dear Patrick,

    I'm so sorry to read about your disease progression. Thank you for sharing your story and thank you for being an important advocate. I am hopeful that, through research, we can figure out a way to defeat this horrible disease. As a researcher, your story and others like yours inspire me to work harder. It's not just a research project that we're carrying out; People's lives are affected. Please continue to share your story and be an advocate.

    Troy

    ReplyDelete

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