A Tale of Two Halves
For those reading this in the U.S., part of what I’m going to write will likely be incomprehensible, as it involves the World Cup. That’s football, not soccer.
The rest of the world is in thrall to this sporting event. Even if your country doesn’t qualify, you grumpily watch at first. In 1994, England didn’t make it, so the country then found itself screaming for Cameroon and their 42-year-old striker Roger Milla.
Bill Shankly, former manager of Liverpool FC (currently owned by the American Fenway Sports Group), put it this way: “Some people believe football is a matter of life and death. I am very disappointed with that attitude. I can assure you it is much, much more important than that.”
On Monday night, England had their first match in Russia, against Tunisia. Eighteen million watched live on TV and 3 million more on computers. It’s the biggest audience of 2018, beating even the Royal Wedding. We won 2-1, so the upside is that I got a healthy boost to my testosterone levels.
Which was much-needed, as I’d seen my neurologist in the morning and the news wasn’t exactly enervating. There was an outside chance that I might be eligible for stem cell treatment. I’d had an MRI scan about a month ago to test this. Unfortunately, my MS had moved on. Though I still have a relapsing-remitting element, what was happening to me now was due to deterioration — an area that is at the moment little understood. The disease-modifying therapies that I’d been on (Gilenya and Lemtrada) have done something — no new lesions for three years. My well-being is really down to what the patient has to report. Three years ago, ballet was as beyond me as it ever was but I was taking myself off to wheelchair tennis on my own. Today my bedroom has for the moment become my cell. At least I don’t have to hide my mobile where the sun don’t shine!
There is a possibility that mitoxantrone might help in delaying this deterioration. I haven’t been offered it, as it has to be discussed by my team of doctors. It’s a chemotherapy medication. Possible side effects include heart problems and hair loss.
Hair loss is the upside: I’m 60 and consequently have the perfect monkish round, central-balding scalp. If I was able-bodied and strolling around at my full 6-foot height, I could still pull off the illusion of a full head of hair. In a wheelchair … no chance.
Chemo might at least make me properly bald! (Photo courtesy of John Connor)
England is playing this Sunday. Hope they win again. I need all the testosterone I can get.
***
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments
Dan Pottman
I too live in a cell. I now am lin the worst thing A middle age man being isolated. No one to ask for help and grappling with taking another dmd. Drugs of mass Destruction. I am so tired of getting a ssdi check the 3rd and know from the 14th till the middle of the month broke. Literally starving and not a day goes by w/o thinking about suicide. No family. No friends. Nothing but poverty and sha.me from a disease I never asked for 28.5 years ago
I want to die.
John Connor
You poor thing... but there is no shame. Shame is when you’ve done something wrong.
Luckily I’d had a semi-successful career when MS struck. Managed to even keep part of it going. Part of my world involves writing jokes - not easy when facing this sodding disease.
I’m only 10 years in & 60 but I also talk of suicide. For me there is a point where I can still physically do it so that no one can get prosecuted for helping me and on the cusp of becoming totally immobile.
From the UK u can travel to Switzerland to a clinic to do it. If I miss my window - I’ll just have to try, late in life a big bag of heroin.
10 years of medical care has at least inured me to needles.
Jim Donaldson
I appreciate your frank comments regarding something we probably all think about but don’t usually discuss seriously with others.
I too am still constantly evaluating when is the right time I can do it without involving someone else.
At first I thought being confined to a wheelchair would be the trigger, but I persisted, then a few years later losing independence by having to give up driving seemed a good reason, an electric wheelchair compensated slightly and delayed the act.
Moving on another few years and having to retire from a job I really liked and had done for 40yrs seemed the final nail
The birth of my first grandson,on my birthday, gave me a reason to carry on and as my wife and I looked after him part time,until he was full time at school, I had the best years of my life.
Another grandson a few years later justified the cancellation and gave me a few more years of joy and reason to carry on.
When my wife was diagnosed with lung cancer last year it seemed the end of the world had been decided for me and I started looking for the most painless and cheapest (I am Scottish after all) methods.
The arrival of our first granddaughter,in February, has taken our mind off our troubles for a while.
Now that my wife has had a few urgent visits to Hospital and we are fighting over MY coveted electric wheelchair I feel once she has gone that will really be a good time to go and not live too long with sorrow.
I only meant to give a short reply but have found writing this down really helps to focus on what “may” become the most important decision of my life.
Lindsey
Those last 2 comments are so very depressing MS is a life effecting illness but giving in just will not help.here in the IOM we are lucky enough to have a very supportive MS network of professionals and volunteers both with and without MS. So it breaks my heart when I read that you have no one to ask for help or even talk to.write to me I’ll chat and empathise because I truly feel your despair and
Cyndi
I greatly appreciate this frank discussion. I am not yet "ready" but I firmly believe that when I am, it is my right to decide. I've had (and continue for the most part to have) a wonderful life and want to be able to exit on my own terms. I want to be able to say goodbye to my family with dignity and as a deliberate decision. While physician assisted suicide is now legal in several US states, all, at present, require a medical diagnosis of terminal illness with 6 months or less to live. No thanks, I don't want to be that far down the road. I want to be able to say "It's been great...but it's time". Forcing persons to pursue drastic (a/k/a messy) and uncertain options is simply wrong. Who the heck gave a government or any other person the right to decide when I choose to die.
John Connor
I get the feeling we might not agree on much else but on this - absolutely.
Am not about to commit suicide at the mo - especially as England are actually playing well in the World Cup for the first time since 1990!
Jim Donaldson
As a Scotland supporter maybe that is a good reason for me to make the decision.
LOL
Just in case someone rushes to my aid
Cyndi
The US didn’t even make it to the dance! I continue to watch tho.