A few days ago, my husband Dave sat on the side of the bed, tears slowly rolling down his face.
‘I can’t even pull my socks on anymore,’ he said, looking at his once strong, hard-working hands. ‘My hands are giving up on me.’
I struggled again not to cry and to say something positive and encouraging while helping him on with his socks, but seeing Dave in so much emotional pain is getting harder to deal with.
This handsome man I married almost 20 years ago is fading right in front of my eyes.
I try to shield our daughters Emily, 18, Molly, 16, and Faith, 10, from what is happening but that is getting near impossible.
At just 45 years old last year, Dave was diagnosed with ALS, or amyotrophic lateral sclerosis – more commonly known as Lou Gehrig’s Disease after the famous baseball player whose career was cut tragically short by the disease.
It is a progressive neurodegenerative condition that affects nerve cells in the spinal cord. In time, this rare disease damages nerves which controls muscles, leading to eventual total body paralysis and death.
Half of all people with ALS live at least three years or more after diagnosis, with 20 percent living five years or more and 10 percent more than 10 years.
The statistics are stark and depressing. Despite years of research, the disease is so complex that it is variable in every patient, so attempts to find a cure are a way off yet.
Scientists are racing to come up with drugs that can slow down the progression of ALS. For 22 years, there was just one medication called Riluzole, thought to give a few extra months of life.
In 2017, the FDA approved a new drug called Radicava, an infusion-type medicine that was shown in clinical trials in Japan to significantly slow down the progression of the disease.
At last there was hope for ALS sufferers across the world but with a hefty price-tag of $147,000 in America. Not everyone’s insurance can afford it but with time against every ALS sufferer, it’s all there is for now.
Looking back it’s virtually impossible to say when Dave’s symptoms started because they were so subtle, but we think that he could have been showing signs over a year ago, although nothing was significant enough that he needed to see a doctor.
He was always an active, strong person, working in construction and then managing a pool cleaning company. For as long as we’ve been together he has been able to build and fix just about anything with his hands.
I remember he was coaching a local kids’ soccer team when one training practice, he found it difficult to run around the pitch after them. It was as if, as he told me, his legs didn’t want to work sometimes.
We were a busy family, constantly on the go, so we just put it down to doing too much, particularly as it wasn’t affecting his everyday life as it was only happening occasionally.
But then his legs started to feel a little stiffer, harder to move. ‘I feel like there could be a disconnect somewhere,’ Dave said as he rubbed his legs one day. ‘It’s as if my brain isn’t sending the signals.’
I Googled his symptoms. ALS along with all manner of brain diseases like MS and Lyme disease came up as the possible culprit, but because it was so rare we dismissed it.
We thought that it couldn’t happen to him, always so healthy – it’s so uncommon that only a little over 6,000 people in the US are diagnosed every year.
But as his legs quickly got stiffer and he started suffering from muscle twitches all over his body, we sought medical advice and two doctors later, in August 2017, he was officially diagnosed with ALS.
On hearing this news I cried all the three-and-a-half hours journey home from Jacksonville because I knew what this meant – terrible suffering and a premature death. How could this be happening to our family? It was so bloody unfair and I was furious.
Determined, I obsessively researched the disease to look for cures or to find ways to slow it down. I found some encouragement but mostly, the information was depressing – ALS is always fatal and progression can be fast in many cases.
His incredibly optimistic neurologist Dr Michael Pulley prescribed Riluzole because there was nothing else. Radicava was on its way after having been approved in May 2017 but no-one knew how long it was going to take to get to patients or if insurance companies would cover it.
I read that B12 in its purest form as Methylcobalamin could slow it down by as much as 600 days by providing energy and muscle strength, thus reducing limb weakness, so I ordered it online and Dave started having daily injections until it got too expensive.
Our daughter Emily started making him protein shakes with colored fruits like berries that are said to be beneficial for ALS patients along with spinach and chia seeds and protein powder to try to keep his muscles built up.
Dave started to lift light hand weights, again to try to keep what muscles he had strong and we bought bikes to keep his overall strength, stamina and health good.
He carried on working, with help, and incredibly, after the initial shock had sunk in, he adopted the most amazing, humbling, positive attitude. Whereas I could cry at the drop of a hat and feel so bitter and angry, he wouldn’t hear of us being miserable.
‘I could be here for two years or I could be here for 10 years,’ Dave said. ‘We’re not going to spend the next however long I’ve got being miserable when we could be making memories together. I’m not having our girls looking back remembering how awful it was when I got ALS.’
In August last year, we attended the ALS Society Florida Chapter’s 4th Annual HOPE and HELP Synposium, a whole day’s event in Orlando where some of the world’s top ALS doctors gathered to talk about medical research and advances.
For me, it brought home the reality of the disease. I saw people in the more advanced stages in wheelchairs, unable to barely move or talk, several of whom were reliant on breathing machines. It was terrifying.
I remember struggling not to cry while we listened to a talk about the importance of voice banks, where the ALS patient can record their voice and use it to communicate when they can’t speak. It was a cruel reminder of what is undoubtedly going to one day happen.
We walked away from that conference with a great deal of hope but also a sense of disappointment. Since the Ice Bucket Challenge in 2014 raised $115 million for ALS research there have been many amazing clinical trials for drugs and medical advancements made to improve the lives of ALS sufferers and their families.
But despite all of the money and the research, there is still no cure on the horizon.
Dr Pulley believes that Dave’s ALS is ‘slow progression’ and I cling onto that even though I can see him getting weaker. His legs are so stiff most of the time that he walks like a zombie – we joke he would make a good extra on The Walking Dead.
Last week he fell in the bathroom because his legs wouldn’t move, so he tumbled, cracked a rib and messed his arm up so bad it was black and purple. Yesterday he fell backwards in the kitchen and banged his head on the cabinets.
His hands are skin and bone as his muscles have deteriorated so he can’t even take the top off a bottle of water. He can’t change a light bulb, he struggles to use a drill, and he can’t walk around the block – he uses an electric wheelchair because his legs aren’t strong enough.
Our two eldest daughters know all about ALS now, but my youngest Faith has no idea what it means, only that daddy has an illness that means he can’t walk very well. I see no reason to tell her what ALS is about – soon enough she will see it in all it’s awful glory when her daddy can’t move, speak, or do anything for himself.
Faith said to me recently: ‘Mum, I wish Dad could play basketball with me again in the yard, I miss it,’ and that cuts us both like a knife to the heart. She doesn’t know it but she is suffering because of this terrible demon of an illness – we all are in different ways.
For the most part we try to keep family life as normal as possible. We plan vacations and days out as much as we can to create as many memories together as we can. Dave gives himself a six month goal to keep walking. This summer, we are planning a big trip out West to see big national parks and different cities as his bucket list is so much more urgent now.
I choose not to think about what’s to come. If I did, I would crumble and I can’t do that – I have my children to protect. I have learned not to freak out when he says that he feels so weak he can’t get out of the chair, or his tongue feels tingly which might mean the disease is progressing. We live day by day – it’s the only way.
Yes of course there are those days when Dave is overcome with emotion because he gets so frustrated that his body is betraying him and we cry together, but we try to focus on all our positives and there truly are many.
Our insurance has covered the cost of Radicava, so he has the infusions, which I have learned to administer. Every day for 10 days, he sits for an hour for two infusions which have now become a part of our lives and could be for the rest of his.
We have an amazing support network with friends and family which makes this journey easier. Our faith is strong now we have stopped asking why this has happened to us and started to concentrate on the good again. It’s no doubt a tough journey while we hope and pray that the cure is discovered in his lifetime but like all ALS sufferers, time is against us.