Mobility of PwMS held even with #ukheat

It is simple to look at this in figures: 15 weeks in hospital for a PwMS and 13 months later doing my own physiotherapy rehab; my mobility has reached the point the medical and clinical staff of the NHS would have wanted me to be at! I am very pleased to say that they were wrong about Secondary Progressive Multiple Sclerosis (SPMS).

The fever I had ruined my mobility not the UK heatwave (#ukheat) as the Met Office describes it!

I can stand and transfer seats. I have managed this at 25^oC, yesterday near Bristol in the UK. It was 30^oC outside and Andy Murray might have been battling with a higher temperature in Wimbledon...It was important to remain in control of the footwork. I thought of the right position of my shoulders, hips and feet on the ground. Balancing my weight and reaching out at right time...

I held strong; cooling during some breaks but did all my transfers standing! I used two cool drink cans. One to replace the other. I am not saying cool as brand cool.
I also thought of my lavender cool eye pad. The PA left me with eye pad on and the second coolest can held on my shoulder with my neck. I moved it around the pulses. The PA had applied a can straight from the fridge to the top of my back before she left!

John came back and got me a iced lemon barley drink. I had a good night. This morning I transfered again standing.

The PAs are competitive and want to reach 10mns of standing. I had to be firm and say that 3mns standing with good stretches is cool!
I think they are pleased to know that they assisted me to reach this stage so they feel I know well when to exercise or not!

The cool cans of drink are back in the fridge!

BTW, in 1992 John and I did a trip to Germany, including the Baltic Coast in East Germany: I was already using the cool can method as it was a very hot continental heatwave that year!

Keep c%l = less fatigue

Any one from the Bath branch that could help me?

This is what I posted on Multiple Sclerosis Bath Branch-Rudge Fete Group on Facebook.

I wonder if any of you has the details of this year fete. I seem to have lost track of them in the in-tray. But I have been busy...

I am very interested in the Rudge fete as it raises funds for the Bath Branch MS Nurses appeal. I have campaigned to get the branch and society to say "MS Nurses and Therapists" this year as I got a bit annoyed when I got a questionnaire I had to write by hand, black ink and capitals...The branch has helped fund with central office the neuro rehab centre in St Martin's Hospital. I had been campaigning fo ages. So you will know why it so important when you read about me later...

The fete is later in the summer but it needs to be advertised asap. To raise the interest, I did this group to late 2 years ago. We need an event page linked to this group. We need to advertise the details. Basicaly, I need someone else to help.

I am a member of the Bath branch of the MS Society. I am also in regular contact with the MS Research and Resources unit in Bristol. It is the only hope I have to get any genuine help for progressive MS. So much so, I have helped them for 17 years. I have become a trustee of a charity called MS Research: http://www.ms-research.org.uk

I had a terrible time in hospital with so much wrong with me that I had to stay 15 weeks. I got to stand when they said I could not ever. I blogged about it: http://standup4ms.blogspot.com

I feel great this morning. My right foot reached the floor properly when getting out of bed. What did I do? Last night with my PA we stretched my hamstrings. My PA was doing a walk and I showed her what she could do to warm up. Now I have a big programme of exercise for the day. I need both legs to support me properly. Oh and I need some Fans for my charity page: MS Research

Oh and one of my friends Neel Shah has got off his bike ! His friend posted some photos tagging Neel during his ride to Paris for MS Research charity...show him that he truly is amazing:
http://www.justgiving.com/neelshah2

Cheerio, let me know if you can help asap !

How my life changed...

I have Multiple Sclerosis (MS) (for 32 years and use a wheel chair) BUT I also had another problem...

In treating my other urgent and serious problem the professionals did not see what else I needed because of my MS.

This was compounded by hospital acquired infection meaning that I could not go to other departments in the hospital for the usual post operation rehabilitation courses. I had to be treated in my room which was not suitable for what I needed.

I lost ground because I could stand and transfer independently before my illness and now cannot do this – and this increased my dependency a lot.

The hospital professionals treating me did not realise that to tell somebody “you will never stand again” is emotionally devastating and how badly it would affect me.


I was determined to show that with hard work and professional help at home - and dogged determination - I WAS going to stand again –and I DID!


I could have had more help –everyone with MS needs this help –not just drugs that only work in the early stages of MS or sympathy but real goals for real life -to be able to stand in my kitchen and take a mug down from the cupboard to make coffee.

What can you do to help?

I have no hesitation to ask you to help the charity MS Research.

I have helped the Multiple Sclerosis(MS) Research and Resources Unit in Bristol for 17 years. The Multiple Sclerosis International Federation(MSIF) used an extract from my Profile of the Month in December 2002 to illustrate what PwMS have to do to cope. I am amazed I thought that...

To keep positive I decided to help in MS research. In particular, in 1991, there was an opportunity to help with an experiment on muscle stimulation at the MS Research Unit in Bristol General Hospital (UK). However, in 1992, the unit was threatened with closure and I had to abandon some work that I was helping with. It was as if someone was ripping away a good book from my hands.

Now, the "good book" has been returned...

I think that it is wonderful that the MS Unit is moving to a one-stop centre to open a mobiltity clinic very soon and carry on with tremor and mobility rehabilitation research. that was worth fighting for. Now I want all PwMS that need it to benefit from this.

Please donate generously to MS Research, a charity that helps people like me:

MS Research undertakes to find practical solutions to everyday problems encountered by those with MS. Practical solutions for those where drug treatment is no longer effective.

There is a wish list on the website of MS Research charity, which gives an idea of how the funds are going to be used.

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Mobility rehabilitation for MS

My name is Laurence Robb. I am 53 now. I found out I had Multiple Sclerosis (MS) in 1976 when I was working as a foreign language assistant in a secondary school in Chelmsford, Essex. I suddenly squinted when I was checking reading a number plate at a distance for my application for a driving licence. I am used to MS. It was diagnosed at the end of April 1983. It has been with me from Remitting-Relapsing MS (RRMS), until after arguing enough with my neurologist, we decided to call it Secondary Progressive MS (SPMS). I knew there was always something left behind after a relapse! I think it might have been in 1992. I do not need to see a neurologist. I have regular contact with physiotherapists specialized in neurology. When there are not enough of these specialist community neurology physiotherapists, I campaign to have some appointed. It is fun. My GP’s prescription is campaigning and physiotherapy. The neurologist I saw in 2003 approved. I have carried on with physiotherapy exercises from the time of my 1983 diagnosis. I became an outpatient of a local community physiotherapy service when I moved from London to the South-West. I progressed with SPMS from using one walking stick, two sticks and some crutches in 2000 to using the wheelchair most of the time since July 2007 after a nasty fall.

I am going to tell you what happened to me in February 2008. It was very traumatic and certainly not caused by MS. I am just nearly getting back to where I was, before it all started. This is going to show that at anytime, even with Multiple Sclerosis (MS) other parts of the body can go badly wrong. I would like to say that SPMS is not understood fully by the medical and clinical NHS staff. It leaves the persons with MS (PwMS) do their own battle, especially if they have a long experience of management of their MS with physiotherapy. In 2008, I had 32 years of MS. I was always active and I had received 25 years of physiotherapy treatment.

I feel that my problems need to be explained from the beginning. I was watching Arsenal getting beaten absolutely by Man United, in February 2008. I felt a bit shivering and cold. I had gone a bit numb and could not stand up from the settee to the wheelchair. I had a “normal” week after this incident. I saw my MS Nurse and mentioned what happened. She wondered if it could be a urinary tract infection (UTI). I said nothing seemed wrong and I did not have a bladder catheter.

The trouble started on Monday a week later when I had a sudden fever late morning I was shaking and rigoring, which needed a call to my GP. The fever went down with Paracetamol. It never left me really. It showed up each time the tablets were due; not with rigoring until late morning the following day. I never stood and tried walking using crutches, as I felt weak. I did no exercise standing in front of the kitchen worktop. It is good for the legs, hips and it makes me breathe deeply.

I was sent to Paulton Memorial Hospital (PMH) by ambulance as my temperature had shot up again. I was frightened! The suspected UTI, that had sent me there, was eventually ruled out. Just anaemia (fibroids) and the beginning of hyponatraemia (caused by two medications for continence and water retention) were diagnosed. Rigoring returned once during the little hours of one morning; a doctor had to drive urgently to my bedside from Bath Royal Infirmary (BRI). The fever calmed down like a ferocious animal receiving a dart.

The following day a geriatric specialist doing her round in PMH had a good look at me and found a painful spot on my lower right abdomen that needed scanning. It took so long to find a slot for this scan. PMH is a community hospital; local surgeries send a lot of work to be done there. I waited patiently. My fever was always returning in the afternoon. Unfortunately, I tried to stand and fell one of these afternoons when I had persuaded someone to help me. I would not stand again...

The long awaited scan time finally arrived. A consultant gynaecologist, who by luck was doing a clinic at PMH, had a look at the scan and said that my ovaries had to be removed urgently. They were swollen and one was inflamed. I felt worried about the operation but relieved that something was diagnosed properly at last.

Infections can be undiagnosed, as other symptoms, which are also urgent like a suspected cancerous tumour to an ovary revealed by the scan. The removal of my ovaries took precedence. After a second emergency intervention due to some internal abdominal bleeding, pneumonia was discovered with its pleurisy sidekick. In the middle of this, a tourniquet had been forgotten overnight by a busy doctor trying to place a canula, I have had a mark on my arm that will be there, as a tattoo, for a very long time. I had fallen asleep when the doctor was called away because I was pumping morphine. My arm was swollen but I remained calm and positive to help the healing process. I did not lose my arm; I felt I was lucky then!

My rehabilitation was concentrated only on my pulmonary condition. I also did not take well to one of the necessary blood transfusions, which even cross-matched, did not suit me at all: I fainted. It is not “Holby City” as I explained to the medical staff. It slowed down the rehabilitation. The ITU staff had to run to my bedside with special oxygen equipment. My room was full of interesting devices. My favourite was the one I called Fred, which was a programmable drip for the antibiotics to treat my pneumonia. It made things complicated when I had to go to have an x-ray. However, I was more horrified to see all these mirrors in the lifts. I needed to have my hair done!

My optimism was still strong. I started making plans to modify the house. I repeated often: “when I get out of here”; the list was getting very long. I was sad to miss the whole spring season. I had to stay a total of fifteen weeks in hospital.

In the middle of this, Methicillin resistant Staphylococcus aureus (MRSA) was diagnosed on my skin. Considering the long process of clearing this infection, which can only work when strict rules are adhered to; I still think that my rehabilitation has been delayed. I was feeling despondent. I had a young PwMS woman visiting me at the time, she said that I should consult my neurologist to see if there was a medication that would help me. I cried a bit for a while, as I knew that there was nothing of the sort. I have not taken any medication to help my MS since 1976.

The family meeting with the staff, just before my discharge from PMH, stated that the outcome of my being able to stand and walk would be unlikely. I was not taken seriously. Staff stood by their professional experience even if it was short. I thought that they did not know me! I had been very, VERY, ill and it is what the medical staff had said. They held on to SPMS at once as a reason for me not to be able to return to what I was able to do before my trauma. It made it easier for them...I was feeling brow beaten.

This might not be glossy but I hope it will enrich some experiences... In January this year, I was pleased with what I had achieved even if I had been told that I would have to use a wheelchair for the rest of my life and that nothing could be done. I was also repeatedly advised not to try standing on my own. I had to try this to see if I was getting any stronger. Standing helped keep my spirits up! I had been given a list of exercises, which I modified to fit with the care assistance I received.

I have had four daily visits from a service care agency since July 2008. In early March 2009, I found that one of the last muscles I had to get working again started holding me vertical (I was not upright in January!) I carried on with my exercises provided by a specialist community neurology physiotherapist. These have been updated to include standing in front of a worktop in the kitchen.

At the end of April 2009, I could stand up myself from a chair, shuffle and swivel into another chair! What will happen next? I feel vindicated! It is extremely therapeutic writing it down on the 1st of May, which was so sad for my family last year.
Laurence Robb

I wish this story benefited the charity that gave me the courage to do what I have done: MS Research
Reg.Office: 10 Oakwood Road, Henleaze, Bristol, BS9 4NR; Telephone: 0117 9286332.) Reg. Company No. 3005230 Reg. Charity No. 1043280 http://www.ms-research.org.uk/

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