#ThinkHand Campaign for Advanced Multiple Sclerosis
Pogressive MS so are hands vital
I attended the launch of the #ThinkHand campaign for advanced multiple sclerosis by Barts MS Health at the Bankside Gallery in Southwark on Thursday 22 February. I have advanced MS and this is a big step in the right direction.
My multiple sclerosis
I can still walk, but it is a very slow walk and I must always use a rollator or walker. SoI cannot 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 multiple sclerosis.
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, walker or mobility scooter.
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.
9-HPT to use at home
#ThinkHand Campaign for Advanced Multiple Sclerosis
The Barts MS Health team are dragging awareness of advanced MS into the 21st 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 assess hand function.
- Give people with advanced MS 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 must 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 and balance 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 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 others take for granted that I cannot do. The #ThinkHand campaign for advanced multiple sclerosis wants to make people more aware of the impact of advanced multiple sclerosis. Hope and quality of life are important for everyone.
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March 2018
i was researching about autoimmune diseases(Multiple Sclerosis to be specific) and current health tech to help curb/manage it and i found this website naturalherbscentre It made a tremendous difference for me I had improved walking balance, muscle strength and improved vision, always thankful for nature that helps in managing these terrible diseases. I’m active now, I can personally vouch for these remedy but you would probably need to decide what works best for you🧡.
Hello Terrica,
I find physical and mental exercise are important. Keeping in touch with people is also very important. Requirements and actually doing them do vary from person to person and it is a matter of finding what is comfortable
I was diagnosed in 1996, before symptoms started. I am a pianist, suddenly unable to open my hands wide enough to get 8 keys. Nobody in my family had MS, nor my grandparents. Last year a cousin younger than me had MS, she is 40. I have primary progressive MS. I do not walk for the last 18 years, I was born in 1962. I have had 6 strokes and 1 heart attack.The Rebif (beta-1a) did very little to help me. The medical team did even less. After roughly five unending years of trauma in the family my MS developed into progressive. There have been many changes in the last 3 to 4 years. Many falls, many fractured bones, and three moves all in five years. I have gone downhill. Considerably. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment for Multiple Sclerosis, I started on MS Herbal Treatment from Kycuyu Health Clinic, the herbal treatment immensely helped my Multiple Sclerosis condition, i had huge improvements.
Hello Celia,
MS is a very cruel disease and it sounds as if your journey has been very traumatic especially over the last few years.
I am very pleased that the herbal remedy is helping you. Unfortunately there is no medicine is available to prescribe to people with advanced MS.
After 20 years of MS treated from 2000 to 2006 with Rebif(efficient to that year) and then Avonex(not efficient to calm down my lesions’ number increase) i found this website ww w. kykuyuhealthclinic. com just 3 months ago, It made a tremendous difference for me I had improved walking balance, muscle strength and improved vision, always thankful for nature that helps in managing these terrible diseases.
Hello Jacqueline,
That must be really good news for you. It begs the question of why herbal medicine is not an approved medication for multiple sclerosis.
Hello Roland,
I also am very pleased that the MS Society have introduced the 1 Km walk.
I do remember something about a horse rider with MS won medals now you mention it. I agree it is team effort with horse and rider and I suspect physically and mentally demanding upon the rider.
I think that more world class athletes with MS will be seen following the huge steps that have taken occured in the last few years for highly effective drug modifying therapies. Too late for us sadly.
I was diagnosed with multiple sclerosis in 95 but had my first symptoms in 87. I tried Betaseron for about 6 years or so. In 2012 I went to a care facility, life was too difficult at home for my husband and family. I have tried several types of medications. I thought you just have to let it run its course; both my legs were spasming mostly at night which makes sleeping difficult.My multiple sclerosis got significantly worse and unbearable because of my cognitive thinking.. I lost touch with reality. Last year I started on the Multiple Sclerosis natural herbal formula we ordered from GREEN HOUSE HERBAL CLINIC, We spoke to few people who used the treatment here in Canada and they all gave a positive response, my symptoms totally declined over a 7 weeks use of the Green House multiple Sclerosis disease natural herbal formula. I am now almost 73 and doing very well, the disease is totally reversed!
wij hadden de verhaaltjes al een paar dagen gemist maar nu weten we waarom gelukkig is ze weer opgeknapt .de liften zijn fijn behalve als ze weigeren ,dat doen ze hier ook nog weleens en dan kan ik niet naar beneden want ik loop met rollator .we hopen dat we weer vele verhaaltjes lezen en je vrouwtje krijg een knuffel van dakota nou groetjes maar weer Herma en Dakota.
Hello,
Sadly I do not speak Dutch, any chance of an English translation?
Hello,
Suddenly I remembered Google translate. I avoid escalators, lethal with a mobility scooter. Either I use a lift or look for someone to carry my Travelscoot (17 Kg) and I follow very slowly on foot. It can make the journey interesting 🙂
John can’t even talk to us now just yes and no but knows exactly what is said to him no control over bowel and has gaviscon 4x daily to try to help his throat he needs to be fed swallowing not good we are managing but upsets us to see him as he is now. He can’t walk or stand I can’t understand why it is so bad been writing to DWP they have even reduced his work related ESA by £57 and said maybe in the future he could attend courses with a view to getting back into work. They are cruel and totally ignorant of real ill people. They really don’t care
Hello,
Yet another example of the insensitivity of the DWP who are responsible for PIP and DLA. In 2012 when run by the government in Blackpool the staff bent over backwards to be accommodating and helpful. Now it is run along the lines of any big business with zilch thought or consideration for the customers. I want to get inside the heads of the people who now process PIP and DLA applications, they show very very little compassion or understanding. It sickens me.