I had a great time at Revitalise Southampton

Nothing really changes for me if I can stay away from chest infections, I can stay pretty healthy.

It was my first day back at the Gym today and I could only get 8% activity by myself on the Medi motion bike. I changed the bike so it worked my arms, in doing this I managed to do 7 minutes. I did some weights after but I felt tired after my time on the hand bike, so I called it a day and went home. I have not done any exercising as I have been away for 2 weeks so I expected to be worse.

My carers are not allowed to do my stretching until a Physio or Sports Therapist has shown them what to do.

So I have just had 2 weeks away at a Respite in Waterside House, Netley in Southampton. I had a great time at Netley, youth week summer games are always a good time to go.

Everyone staying at Waterside House, even the staff are put into groups, you have to earn points throughout the week, I was Yellow group unfortunately we came last again lol.

Music is played most of the time in the centre, DJ Dan plays music most evenings and I thought the music was good. However I am an 80’s child so I kept that quite as it was youth week, I think lack of hair on my head may have given the secret away!! My date of birth will confirm that😃

We went on a day trip to Sandown Isle of Wight; the temperature was so hot that day.

The task was to ask a shop assistant if they had anything with Sandown on it for free to earn points for your team. I was not able to ask the volunteer to ask for me, they said I was too polite to ask!

I really enjoyed the day trip to Windsor Castle; the temperature was even hotter in London, the grass was so dry. I went around the Abbey where Prince Harry and Meghan Markel got married. I also went around the rooms where Kings and Queens have stayed over the decades. I got a selfie with Prince Harry and Meghan, well a selfie of a picture with those two anyway! I also had a selfie of me sticking my finger on Queen Victoria’s backside, thanks Steve!

Towards the end of the week we went on a relaxing boat trip on the river Hamble. We nearly did not get there, we misheard what the man from the boat company said, which gave us wrong instructions. Anyway we got there in the end and it was well worth the wait, I thoroughly enjoyed myself cruising up the river Hamble in an open top boat.

On the last day of youth week we had the Summer games, this involved having a Treasure Hunt around Netley. Four clues were hidden around the village, one lead to the other one and so on, I think it then led to the main clue. My Wheelchair was slower than everyone else so I missed out on answering most clues.

We had a water and powder paint fight where we all had to wear a mask so we did not breath in the paint dust. There were various different games which made it an enjoyable day but very messy. There was a Firework display in the evening, I went upstairs for a better view on the balcony, the trouble was it had finished by the time I got there... unlike me to be late 😀

The second week we went to Southsea opposite The Isle of Wight where you watch cruise ships and large ships going to Portsmouth or Southampton. We visited Blue Reef Aquarium which was good, it was another hot day so when we got back I sat in front of the fan to help me recover and regulate my heat.

I went shopping with Alice, my friend who is a Carer/Volunteer from Peru, I always have fun going shopping with Alice. I bought 4 Tee Shirts from Primark, they have some good Tee Shirts in Primark.

I went to Portsmouth Dockyard where we found the Mary Rose museum. I have been there before, I was getting hot again so at least it gave me the opportunity to get out of the sun. I went up the Spinnaker tower with views of the Dockyard in the sunshine, last time i was here it was cloudy.

I had a great time over the last two weeks the weather was amazing, we only had one day of rain.

The one thing that has pleased me is that I have only had one evening of pain in my shoulders. Laura the Masseuse at the Kent MS Therapy Centre has been treating me with Hot Stone Massage on my shoulders once a week, it has really helped relax my shoulders, particularly my trapezius muscles . The reason I usually get pain in my shoulders is due to being in my Wheelchair for most of the day and if I am in the wrong position.

I look forward to my massage with Laura on a Thursday, we have a good laugh and she takes the time to listen to me.

One thing I get really frustrated with is when I am speaking to someone and they say ‘yer’ like they understand what I said, when I can tell by their face that they in fact potentially did not. I know I am not easy to understand, most people will say ‘sorry’ then keep saying sorry till they understand me. I much prefer them saying ‘sorry’ until I can become clear.

Sometimes I feel like saying to people who don’t take the time to truly listen and understand ‘what did I say?’ but I would not say that as it is rude and I wouldn’t want to make them feel awkward. However most people do not say ‘yer’ when they do not understand me.

I really do not mind the person speaking to me keep saying ‘sorry’ until they understand, it may take a little longer but it makes me feel like what I feel or have to say matters.

Using Tens machine

My (RIG) my feeding tube was installed 6 months ago now, things at the moment are going pretty well. Initially I was worried I would not get enough fluid but fortunately I get about 2 litres of water every day. I do miss eating certain foods like fish and chips, Chinese food, I use to enjoy Singapore fried rice and chicken in black bean sauce, it use to remind me of my holiday in Singapore.

 The bonus of being PEG fed is that I have not had any Chest infections in the last 6 months, I hope I have not tempted fate by saying that!

 The Chest infections have caused me to be immobile, I have little movement in my left arm but I have good movement with my head, that's all I can move. My MS Nurse did say my (MS) is pretty much stable, it does not feel stable as my mobility has got a lot worse since having the Chest Infections.

 The money I am saving by not having to eat I am investing into having Sports Therapy twice a week. The Sports Therapist friend of mine, Simon, is using the Tens machine to Stimulate the Tendon in the shoulder , which is important in Rotator Cuff. When the Tens machine is contracting, I move my arms outwards from my body. We use the Tens to Simulate the facial muscles to work the lip muscles to help with my speech. When the Tens is on the Facial muscles, I try to say the letters of the Alphabet, as clearly as possible. The letter X is difficult to say it sounds more like S. This has however improved with time, I am starting to say the letter X better now, my right arm is also getting stronger.

 I normally have a positive outlook on life, always smiling and laughing, it gets me in trouble sometimes, I tend to laugh at serious things as well!

 I Just spent a week at Revitalise in Southampton, we visited Monkey world, I feel at home there with my body hair except where I most need it on my head!

 We also went to Marwell zoo where my wheelchair battery gave up, I had to be pushed back to the minibus which I found funny...Not so funny for the person pushing my chair, I hope their back is ok!

 The same thing happened in August last year, where my battery gave up when crossing a road opposite London Zoo, gave people something to laugh about for the rest of the day!

 I got wheelchair services to replace the batteries, a valuable lesson I learnt there, I must get the chair fixed the first time it happens.

We had an Oscar night at Restbite, I won an Oscar for having the best smile.

 My Carer has been stretching my hamstrings and doing an exercise for my Hip flexors, the last few weeks, I have just started to see an improvement when using the Medimotion bikes (Power Assisted Bike) at the Gym I go to. For the past year or more I only had 1% activity by me but the last few week's I have managed to get 20% to 30% activity by me.

My Parents took me to Wingham Wildlife park near Canterbury as it was Bank holiday Monday, a very hot day, the hottest early bank holiday Monday on record. Where has Spring gone, our weather has gone straight to Summer from Winter...Spring has always been my favourite time of the year. I do enjoy myself at Wingham Wildlife park visiting the animals, I especially like seeing the artificial Dinosaurs and reading up on them.

The trouble is, I like sitting in the sun but unfortunately it seems to make me worse. I hope it has not affected me to badly and I am able to put some effort in to the bike tomorrow at the Gym.

Part 1-The early years

My name is Gary , I was diagnosed with Relapsing Remitting Multiple Sclerosis (MS) in 2002. My (MS) has progressed to Secondary (MS) now but l continue to be positive.

This is the journey (MS) has taken me on over the past 19 years, places I have travelled to, some by myself, different sports I have tried, treatments I have done, exercises I do to get stronger or maintain my (MS).

My parents took me to hospital in 1998 due to me showing signs of a stroke, my tongue was slanting to the right which was causing my speech to be slurred, I had double vision and my energy was very low. I had the usual tests carried out, I had a lumbar puncture, MRI, head scan and blood tests. I was given a dose of intravenous steroids which gave me my strength back, it made me feel like Popeye!

I did not do too much whilst I was on these steroids, at the time a Nurse did mention to me I could have MS. I was learning about computers as I wanted to work in this area, I really hoped that this would not affect my ambition, at the time I did not let it.

I had a follow up appointment with my Neurologist in 2000, he did some simple tests. He said that due to the way I had recovered he did not think it was multiple Sclerosis, but if I have another Relapse it will be confirmed. He also noticed my eye movements were slower than they should have been. He looked surprised at the time, he said I may have Myotonia Congenita so he confirmed this by getting me to clench my Fist, when I tried to open my fist it was very slow to open, this confirmed his suspicions.

Myotonia congenita is a Congenital Neuromuscular disorder that affects skeletal muscles. The symptoms include, delayed relaxation of the muscles after voluntary contraction and may also include stiffness and cramping.

So I decided to join a local Gym, I also ran round the block every other day to get my strength back. I found good exercise for me to do was the Cross Trainer, I spent 40 minutes or more doing this, this worked my Core and Hip flexors which was great as this was a weak area since my relapse.

I went to the Gym most days to get my strength back, I did not have much strength in the first place so I figured it would not take much effort to get it back! I started to regain my strength over the next few weeks, this is when I realised that I needed to have a positive outlook on life and do the exercises most days.

I felt all weak and I had double vision in the Summer of 2002. A few weeks later I had an appointment with my Neurologist where it was confirmed as (MS). I was given a dose of oral Steroids, I felt very low at the time but I thought to myself I must fight this (MS) and stay strong, be positive.

Looking back when I was a teenager, I went on a school trip round Europe, visited some interesting places, Berlin Wall, St Basil Cathedral in Red Square Moscow and went to the Artic Circle. I was given the name of clumpy, I was very clumsy, often tripping over things, I even slipped on a Banana skin! I can see why they called me clumpy, this was the early signs of Multiple Sclerosis.

I started my exercises again once I had finished the dose of steroids, going to the gym most days, did the usual running around the block, using the cross trainer and weights at
the Gym.

Part 2-on my travels

I met a friend Adam in Los Angeles in 2003, I was staying in Hollywood, which was fun. We went to Las Vegas where I did a helicopter ride over the Grand Canyon. Our stay in Down Town Vegas was an experience too, my friend and I were walking through down town Vegas when this homeless man stopped us saying he had just got out of Prison, have we got 5 dollars, we made a quick exit from there. We next flew on to New York, we visited Ground Zero which was an emotional place.

My friend was flying home a few days later as the Gulf War had started, he did not feel safe flying but I was unable to change my flight. So I decided to get a coach to Toronto by myself, where I visited Niagara Falls. I met this lady in Toronto, later that year I visited her in Singapore, we then went onto Kuala Lumpur and Thailand.

I started to get pain down my left leg towards the end of the year, this pain got worse over next few days. I went to see my local GP, who said it was Sciatica. I was told I needed to stop being impatient which I was not happy with.

I was working in London at the time, I had to stand on the train, as it was painful to sit down. When I was at work I use to kneel down to use a computer, people must of thought I was proposing to them! When I was on the train to London I saw my Neurologist, I told him about my back so he wanted me to arrange a private appointment to see him.A few weeks later I was due to see my Neurologist, I decided to have a nice warm bath, as my muscles were all tight. This was not a wise move as it made me all weak but I made it to my Neurologist. He did a few tests like lifting my legs slowly off the bed, he straight away told me that I had a slipped disk. I had an MRI scan, it confirmed that I had prolapsed my disk L5 S1. Once I got over the operation and the scar had healed, I slowly regained my strength by exercising most days.

I was asked by my MS Nurse in 2005, did I want to be placed on the Drug program Beta interferon as I experienced a few relapses in a few years. I was unsure at first, but I decided to give it a try. I self injected on a Sunday which then gave me Flu like symptoms the next day. My energy was very low and I had these symptoms for 2 days. I felt strong for 2 days then my energy levels started to become low again by Friday.

This was the same every week so I did not want to exercise whilst my energy was low. My muscles started to tighten, this is what happens If you do not exercise. I had another (MS) relapse several months later so it was evident that I needed to stop taking this drug Beta Interferon, as this drug was not agreeing with me.

Sadly, my mum was diagnosed with Pancreatic Cancer in June 2007, she had an operation to remove a Tumor from her Pancreas. The Operation was called Whipple procedure, this was a very worrying time for us as a family but thankfully all was okay with my Mum. Not surprisingly though I had a Relapse at the same time, I was due to go on a cruise to Australia and New Zealand in Six months, so I was on a mission to get my strength back .I wanted to be able to swim in the Great Barrier Reef, I had lost the ability to swim since my Relapses but a friend helped me to swim again, she got me to lay on a float in the pool, kick my legs like you do in a breast stroke so I did these pool exercises every day.

I went to the Gym before the pool, there I worked on my Core and my Hips. Several months later I started to perform a breast stroke motion laying on the float, l did several lengths a day. A couple of weeks later I was swimming a length doing the breast stroke with no floats.

I was not concerned about traveling on my own, exercising every day had maintained my strength so I was still able to walk unaided.

I used Airport assistance when travelling by myself, this really is an extremely useful service to use.

l flew out to the other side of the World by myself in early December 2007 for AUCKLAND, New Zealand. This was where my Cruise departed from, i travelled down the east Coast of New Zealand, going to all the major cities.

I bought a fold away walking stick whilst I was away but I only had to use it on occasions, I left it at a place we visited but it was still there when we went back! Most memorable experience I had was when the ship travelled up the truly inspiring Fiords land. Shame it was raining all the time, at least I saw hundreds of waterfalls cascading down the mountain side.

The ship travelled to Newcastle, and the final destination was Sydney. When the ship arrived in Sydney l phoned my Mum opposite the Sydney Opera House where the ship had docked.

l stayed in Sydney for 5 days where l spent Christmas Day having a Barbie, nice way to spend Christmas day! I left Sydney travelled to Cairns where l achieved my goal...swimming in the Great Barrier Reef! I went to Daintree Rainforest and visited aboriginal encampment where I threw a Boomerang, it did not come back to me!