Diary of a Man with MS
Started in June 2016. Diary of a man with MS is a sporadic report of my life with MS. There are so many ups and downs, twists and turns. Sometimes I think it is worth telling other people about them.
Sometimes I want to keep the story to myself. None the less this whole website is a story of my life especially the tab ‘Living with MS’.
Diary of a man with MS
MS is another piece of baggage that can make the emotional roller-cosaster ride of life even more exciting or should I say daunting as well as frustrating.
An after thought
I have divided the diary section up into years that way it is easier to see what happens and when. I think this makes it more logical.
Unless I am careful this website is going to get too large and unwieldy. Maybe it is there already. Who knows?
Essential Extras For The Topro Troja Rollator
The Topro Troja rollator is a reliable walker if you have difficulty with balance Maybe you find walking difficult or struggle carrying items such as a plate of food. I have used these rollators for several years. I’m a happy customer. I am going to tell you about some essential extras for the Topro Troja […]
Can You Cure Multiple Sclerosis
Can you cure multiple sclerosis (MS)? It is a question that would always receive a negative reply. Recent medical developments, described as miraculous, can now lead to a cure for MS. People newly diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) can have their immune system rebooted using stem cells extracted from their bone marrow. Before […]
Be a Garlic Crusher With A Rocker
Be a garlic crusher with a rocker though the experts say you should chop garlic. Well try a Joseph Joseph Garlic Rocker that’s all well and good saying you should chop garlic but they ain’t got my problems. No I definitely find it easier to crush garlic with a rocker. Even The Wife says its […]
I started the MS Smart trial
On 7th January 2016 I started the MS-SMART drug trial. 3 drugs are being tested and the hope is that at least one of them will stop neurodegeneration. If you are not too sure what this means then call it shredding of the brain. People with Parkinson’s and Alzheimer’s suffer from the same problem. Three […]
The Highwayman in Berkhamsted
The Highwayman in Berkhamsted used to be a Blanc Brasserie restaurant, it catered for people who use a wheelchair admirably. There was a good disabled loo at pavement level. The dining area is over half a dozen steps lower than the entrance but there was a lift for wheelchair users to get to the dining […]
MS SMART Trial
I am excited because I have been asked to participate in the MS SMART trial. This is a trial for people with secondary progressive MS. 3 drugs have been selected. They have shown the potential to protect nerves from damage, which could ultimately stop or slow disability progression. For the trial you are allocated at random one […]
Life without a FES would be unthinkable
I have SPMS and seriously disabled with foot drop. I was fitted with a Functional Electrical Stimulator (FES) in December 2014. A consultant from Queens Square, London suggested that it would help my walking. At first I found it very fiddly to setup and this did not inspire me with confidence. Within a few days […]
Swimming is proper exercise
At hydrotherapy I had unexpectedly found myself swimming doggy paddle. Suddenly I realise swimming is proper exercise. There is no fear of falling over. It uses so many muscles. It is healthy exercise and no fear of falling over, call it a water workout. Feeling exhilarated by the thought of swimming a few strokes I […]
Repairing my rotator cuff
Repairing my rotator cuff was my operation in August 2014. Its now December 2015, that was more than 15 months ago. My shoulder now has a full range of movement but no strength when lifting my arm up to the horizontal position. I assumed this would to be my misfortune for the rest of my […]
ASCEND, Whoops We Got It Wrong Again
ASCEND drugs trial of Tysabri or Natalizumab was seen by many people as the drug to stop SPMS progression. It was a disappointment. I was on the ASCEND trial for two years and finished in October 2014. A year later Biogen, the manufacturers of the drug announced ‘Natalizumab … did not meet its primary and […]
Were There Any Benefits Doing The MS Mile?
Were the any benefits walking the MS mile? Definitely! On the 9th September I walked the MS mile. Definitely YES 🙂 I raised just over £ 1,700 for the Chilterns MS Therapy Centre I proved to myself I could walk three quarters of a mile even with a rollator :-)) Taking exercise on a regular basis, […]
Game Using Only Dice And No Board
Think of a game using only dice and no board, they are few and far between. Here is a game using only dice and no board. It is a classic South American variation of liar dice. Its called Perudo. An exciting dice game of skill and luck. This is a game of bluff Knowing the odds certainly helps. […]
Long handled Leaf Collector
Use the Long Handled Lead Collector to keep the lawn and patio clear of fallen leaves and you will not even need to bend over. The two large plastic grabbers It makes collecting fallen leaves, cut grass and other garden debris easy. The design of the two large flat scoops makes the removal of garden rubbish so […]
One Way Flextendable Drinking Straws
One Way Flextendable Drinking Straws This is a pack of 15 flexible drinking straws, they can be made longer and have a one-way valve. One Way Flextendable Drinking Straws These long flexible drinking straws have one big advantage, the liquid stays in the straw when you stop sucking. There is a valve in the base which […]
High Vision Reading Light for the Desk
The Desktop Reading Light is a high vision reading light, ideal for the desktop. The flicker free bulbs create a near daylight effect. This means it makes reading easier especially if your sight is not perfect or you are visually impaired. The strong glare-free clear light allows you to read and concentrate for longer. If […]
Bananagrams Game
Bananagrams game is a fast and fun word game that is easy to play. No need for a board, pencil or paper just a small flat space big enough to build up a cross word of the letters. Ideally Bananagrams game is for two people but more can play. It is an immensely enjoyable game of words. Educational […]
Now Its My Turn To Walk the MS Mile
After several weeks of training the big day arrived. 12 September, now it’s my turn to walk the MS Mile. Getting there My training was walking 100 yard lengths with my Rollator. I felt huge benefits from the exercise, I feel more positive and my balance is now so much better. I am now walking distances […]
PURElite 3 in 1 Magnifying Lamp
PURElite 3 in 1 Magnifying Lamp can be used as a floor lamp, a table lamp or a clip-on lamp. The bulbs of the multipurpose lamp create a near daylight effect. This makes them excellent for reading and as a study light. It offers natural light as well as magnification. And best of all, long […]
Walk the MS Mile. Video, Good Exercise For Me
Good exercise is something we all need to do. It gets those muscles working and it also makes me feel a whole lot better in mind and body. Since I signed up for the ‘Walk the MS Mile’ for the Chilterns MS Centre I have gone out nearly every day with my rollator pushing myself […]
A Short Video – Me and My SPMS
Below is a short video of me taken recently after a networking meeting. To watch the video click on the picture I know full well that after a diagnosis of MS you may well feel shell shocked, devastated, depressed or even as if the world around you has collapsed. Despite the diagnosis MS […]
At Night I Can’t Just Fall Into Bed
It’s the evening, I’m tired and its bedtime but at night I can’t just fall into bed. I have to go through a ritual every evening before I can get into bed and start reading my book. Getting undressed and removing my FES is quite a palaver. If I do this standing up I’m guaranteed to […]
Training for ‘Walk the MS Mile’
I’m now training every evening. Getting fitter so I can walk the ‘MS Mile’. Training time Every evening at about 5 o’clock I’m out training, doing a walk with my rollator. I increase the distance every few days. D Day is Saturday 12 September and takeoff is at 11.00 outside M & S in Berkhamsted […]
Aidapt Wood Button Hook or Zipper
The Aidapt Wood Button Hook or Zipper is a handy device for doing-up buttons and pulling a zip up or down. Its easy to use, there is a loop at one end for buttons and a hook at the other for zips. The button loop simply passes through the button hole and clips around the button which […]
Walk the MS Mile 2015
On 12 September 2015 I will be walking 1,760 yards or 1 mile, to help the Chilterns MS Centre celebrate its 30th birthday. The Challenge Maybe you don’t think that is very far; for me it is one heck of a challenge. I have always liked a challenge, I’m definitely up for this one. The […]
Drop Foot And The FES
It’s now August 2015, time to think about my drop foot and the FES ; I have been using a Functional Electrical Stimulation (FES) to help me walk since December 2014 that is 9 months. It is a dual channel FES. I cannot lift the toes or front of my left foot off the ground. I cannot […]
TGA Launches Lighter Mobility Scooter
Building on the nationwide popularity of the Minimo range of folding mobility scooters, TGA launches a lighter mobility scooter the Minimo Plus for even greater levels of independence and transportablity. This latest version of the Minimo Plus is easier to lift, provides an upgraded driving experience and delivers additional safety. Its advanced lightweight design combines the compact […]
Bath or Shower Locking Suction Cup Handles
Years ago when I climbed into a bath I just knew it is going to be difficult to get out. Then my disease progressed and I needed help with balance and standing up in the shower. The shower is in the bath so I had to climb into the bath first of all. How did […]
Non Slip Outdoor Step
The Non Slip Outdoor Step is is a practical and clever idea. It instantly reduces the height of a step. The non slip outdoor step is ideal for giving you that little bit of added help when tackling large doorsteps. Its allowing you to take two smaller steps rather than struggling with one large step. All […]
Should A Mobility Scooter Be Insured?
Sould a mobility scooter be insured? The simple answer is yes but it is not a legal requirement. Always check your insurance, sometimes household insurance can be sufficient. There have been a small number of cases where uninsured people have lost their homes after being sued for negligence after injuring people with their scooter. Don’t let it […]
Good Days and Bad Days
Its only started over the last few days. It’s a return to the old times of good days and bad days. What’s happened? I am still just as busy. I am still doing things that I enjoy. Some of the things I do even earn me a bit if money. One small thing has changed […]
Diagnosed with MS And You Drive A Car
If you are diagnosed with MS (multiple sclerosis) and you drive a car then here is some good news. There are one or two hoops that you must now jump through when you get the diagnosis. You must tell the Driver and Vehicle Licensing Agency (DVLA) that you have been diagnosed with MS. Also the […]
Wood and Fabric Hand Fan
Swish a Black Wood and Fabric Hand Fan gently in front of your face; it creates a gentle breeze that will make you feel cooler. Elegant solution Using a Black Wood and Fabric Hand Fan exudes an elegant style so you keep cool while everyone else is getting too hot. I think a folding fan is an excellent […]
Do Hospital Gardens Aid Recovery?
Hospital gardens can help patients with recovery. They will spend less time in hospital. A garden provides access to active exercise and can instill a desire to live My experience in 2009 I was working in Hamburg when I fell over, cracked two ribs and punctured a lung. After the operation to insert a tube to […]
Mobility challenges
MS is not a good disease and many sufferers have difficulty getting around. Shall we call these mobility challenges? We are all different Each MS sufferer has a unique set of problems the usual culprits are walking, mobility and balance. There are plenty more problems in case you were wondering. Here are some of my […]
Reunited With My Scooter
Man is reunited with his lifeline scooter A father has credited the power of social media with helping to reunite him with his ‘lifeline’ mobility scooter after it was was snatched by thieves. Patrick Burke’s three-wheeled scooter vanished from outside Berkhamsted’s Quaker House last Tuesday evening (9 June 2015) – but thanks to his daughter […]
A Very Wet Phone and 5 Rules to Dry it
Does your mobile phone float? Mine fell into the loo. I had a very wet phone. A very wet phone and 5 rules to dry it. Let’s start at the beginning I’m a bloke and I keep my phone in the breast pocket of my shirt. If I bend over at the waist I will fall […]
