Regular updates on Aaron Attacks MS Facebook Community Site
22nd July 2016 ~ When Life is sweet, say Thank You and Celebrate. And when Life is bitter, say Thank You and Grow. ~
Two weeks ago we took an unplanned trip to Canberra to see Aaron’s Neurologist for neuropathic pain treatment in the form of Botox Injections. It’s too early to tell if it is working or if it will provide any lasting relief, the pain is still annoyingly present, but the frequency of the intense attacks has reduced. In the vain of “trying anything” and ultimately seeking comfort for Aaron we will return every 8-12 weeks as needed for top ups.
The Chemo aka ‘blue juice’ hit Aaron a lot harder after his last round in June and the steroids didn’t seem to perk him up as much as they have before. He had insomnia (and a little MS ‘roid rage’) for the first two weeks combined with the neuropathic pain meaning very little sleep. This was closely followed by feeling like a train has hit him, extreme fatigue and not a lot of motivation. Through it all we try hard to stay positive, to see the good in each day and to find reasons to smile.
Our news this week is a little bitter but also sweet; our application through Enable NSW for a Power Wheelchair for Aaron has been approved! It’s a little bitter as it is a physical recognition of Aaron’s increasing disabilities; things aren’t getting better, and as hard as it is for Aaron he is accepting that his condition is progressing and he needs more and more assistance. It is also rather sweet as it will hopefully give Aaron back some quality of life and independence. It will allow him to conserve energy used on everyday tasks as well as feel he can partake in activities in the whole house without restrictions. The new chair will have a rise function allowing Aaron to raise himself to eye level once again, something he has really missed for a long time now. He can no longer weight bare ie he can no longer stand at all without support for more than 3-5 seconds (on good days). The new power chair will open up a world of opportunity for Aaron in his own home (we won’t be able to transport it….) but he will be able to reach cupboards higher than I can and chase me around the house 😉Paperwork has been received and we are gathering funds for our required contribution.
We would like to take this opportunity to thank some very kind donors for gifts and personal messages we received all the way from patients at AA Maximov in Russia, as well as a few home grown cash deposits to AAMS, all of which will assist greatly in our contribution for Aaron’s new chair 🙂Huge thanks to our friend and HSCT Warrior Amanda Dean – Rushin’ to beat MS for supporting Aaron, raffling her Thermomix and rallying to raise these funds.
24th August 2016
Four years ago today Aaron was in ICU recovering from spinal surgery. We were certain it would stop the tingling, numbness and unexplained ‘odd’ feelings he had been experiencing. We had just returned from a short 3-day trip to Tassie – little did we know it would be our last family get away and that the road ahead would get harder, rougher, steeper and that the challenges would increase day by day.
In Tassie Aaron was active, he was walking, driving us wherever we were going, he walked Mt Wellington in the snow and ice with gale force winds blowing us over, he climbed the 259 step circular staircase to the top of the ‘Shot Tower’. He walked all over Port Arthur for a full day and again for the ghost tour that night. He was experiencing odd numbness and tingling on his left side and weakness that slowed him on the last day. We thought that surgery the following week was the answer and would fix it, that we would go on with life running our business and ‘living the dream’.
Over the next 3 months I became Aaron’s carer. He just wasn’t ‘recovering’ like the Surgeon had said he would and things were getting worse and worse each week.
Spinal fusion lead to a demise in Aaron’s condition – it also lead us to his MS diagnosis and answered many many MANY years of questions and doubts. The surgery most likely accelerated his MS, he had/has lesions in the area where the surgery was done. Pre surgery scans show the scarring is present and post op scans show it is worse. We have since learned from reading stories and talking to others that it is not un-common for Males around that 40-year age to have similar stories. What a shame that back in 2001 when Aaron had a serious Motorcycle accident and was in rehabilitation that the Dr’s and specialists were so quick to blame ‘his mind’ for what we now know were MS symptoms. To say we feel completely let down by Australia’s medical system would be an understatement. Our disappointment in the Dr’s and specialists continues on to this day as we fight for Aaron to be treated for the aggressive progressive disease that has stolen his life in 4 short years.
Today, 4 years after that ‘dreaded surgery’ despite trying mainstream MS treatments, researching any and all possible remedies, perusing HSCT overseas and the past 8 months having follow up chemo, Aaron’s symptoms and disability still continue to increase.
** He is getting worse on the Kurtzke Expanded Disability Status Scale, reaching 8.0 EDSS, ratings range from no disability at 0 to death at 10.
** He is completely confined to his manual wheelchair awaiting a new power chair, he is what would be classed as an MS Paraplegic and has no movement below his waist yet still experiences spasticity and leg spasms. Declining mobility is having a major impact on his daily life, restricting his independence.
** He has lost control of his bladder with a permanent Supra Pubic Catheter that causes continual discomfort, infection, social consciousness as well as needing to be changed every 6 weeks by a community nurse which he doesn’t not handle well and requires more meds (it’s also darn expensive…..).
** He can no longer weight bare and requires assistance with transfers, he spends most of his days in his chair, uncomfortable and unable to do much outside the confines of our home.
** He has ongoing neuropathic pain that requires trips to Canberra every 8-10 weeks for 6 x injections in a place no male would ever dream of a Dr putting needles in.
** He has one remaining Mitoxantrone (Chemo) dose in 4 weeks which involves another trip to Canberra (all at our expense) requiring both myself and our Son as the Chemo really knocks him around.
** His hands are cramping up and he is finding it increasingly difficult to do small tasks and is requiring assistance all too often for his liking.
** He is on over 30 tablets a day requiring blister packs for organisation, compound medication, vitamins, supplements, anti-depressants, anti-epileptic meds, pain meds all requiring alarms and reminders including a 2:30am wake up for both of us as his memory fails him often and if he doesn’t take the medication the pain is ten-fold.
** He gets excruciating headaches that come from nowhere and can debilitate him for hours.
** He has increasing cognition and cognitive symptoms, memory (acquiring, retaining and retrieving new information), attention and concentration (particularly divided attention), information processing (dealing with information gathered by the five senses), executive functions (planning and prioritizing), visuospatial functions (visual perception and constructional abilities) and verbal fluency (word-finding). All these impact him (and us) daily.
** He struggles with frustration and is mostly acting out his anger with himself and at the disease every single day.
** He misses his ‘old life’, riding motorcycles, walking the dog, standing to piss on your own, but more importantly he misses mate-ship.
MS is isolating, for the person suffering and for those closest. For whatever reasons our social circle has diminished, we don’t get to ‘go out’ without a lot of planning (and a lot of pain for both of us). We can’t go on a family holiday or take a weekend away, MS has all but confined us to our home. Aaron can’t just jump in the car and have lunch out or browse around the shops. The ‘normal things’ most people do without a second thought are far from reach and we are finding that quality of life is becoming harder and harder to achieve. Don’t misunderstand, we still smile and laugh although it is very occasionally, Aaron is still Aaron, he can be funny, act the fool, joke and debate, he is a wealth of knowledge on particular topics that still interest him, but he is not “living well with MS” nor does he see the future getting brighter or himself ‘getting better’.
The last few weeks have been particularly hard for Aaron as our Son embarked on the purchase of his first car buying a vehicle that needed a ‘bit of work’. A few short years ago Aaron, who is a qualified Mechanic, the man whose passion, hobby and life up until MS struck had been cars and bikes would have revelled in helping his son He would have spent hours with him bonding and working on his first car. It has been something that I know he dreamed about from the day Jacob came home from NICU. Instead, with no thanks to MS, Jacob and I have spent time working on the car together with Aaron’s guidance and for short periods and at times Aaron could, we all worked together. There is still plenty to do, and with a sadness and regret Aaron has admitted that he would’ve had it all done by now….if it wasn’t for effin MS ……
We head to Canberra next week for Botox, then return 2.5 weeks later for the final round of Mitox (it has a lifetime dosage which he will reach with this final dose). For now, our days are filled dealing with ongoing building issues from our modifications and waiting for rectification works. Waiting for delivery of our new bed which is ready at the warehouse but had to be delayed due to modification/structural issues & waiting for builders …… Waiting for NDIS and or any carer support funding that might or might not become available to help us both. Aaron desperately needs assistance with some light physio and stretching yet unless we can privately fund it there is none available through the community (see waiting for NDIS….) and I could do with a few hours to myself just once a week or so …. Waiting for the phone to ring or the knock on the door that is a friendly face or voice of mate ship ……Waiting for Aaron’s immunity to rebuild after the harsh rounds of Chemo…. Waiting for a cure that might give us hope to go on….. lots of waiting.
That endless waiting has led to a lot of reassessing and soul searching for Aaron, trying to find out who he is now and where he fits into life. Working out what his life can be now with so many social obstacles and physical barriers to overcome. He just needs a little help to find his way – I only hope it’s out there.
20th September, 2016
Here begins a month of memories for AAMS; 2 years ago today Aaron and I were on our way from Sydney International airport on the long haul via Dubai headed to The A.A. Maximov Haematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre in Moscow Russia.
We both have very fond memories of our month in Moscow, it is a beautiful city and given the opportunity we would both return in a flash. We met some amazing people we will never forget and we were touched with kindness and caring from around the world while we were there. But we also have a touch of disappointment that we weren’t able to get Aaron to see Dr Fedorenko earlier and that by the time he did arrive in Russia for HSCT it might have been just a little too late to halt his aggressive disease. That coupled with the fight for follow up chemo being delayed by our unhelpful medical profession in Sydney has meant Aaron’s MS has unfortunately continued to progress since the transplant.
Our family spent the past few days in Canberra ACT for Aaron’s final dose of Mitozantrone Chemotherapy, and a dose of Methylprednisolone (which has it’s own side affects). His bloods are all doing what they should, the chemo is harsh and attacks the body’s immune system aiming to deplete the number of cells that are attacking the myelin around nerves that cause the increasing symptoms. As Mitoxantrone suppresses the immune system the white blood cell count falls and immunity is suppressed.
Is it working? Sadly, we don’t think HSCT worked, is the follow up chemo (Mitox) slowing the disease down? Unfortunately, we don’t have a crystal ball to really know but based on Aaron’s progression over the 9 months of treatment we don’t think that so far it has. ‘They’ don’t really know enough about Primary Progressive Multiple Sclerosis, it is aggressive and unforgiving, and often progresses without apparent lesion activity on MRI’s. Aaron was almost a 6 on the EDSS scale when he had HSCT, now 2 years on he is between a 7.5-8.0. We hope upon hope that he stays where he is and is able to find some quality of life. Results from here on are based on his progression so for now, again, we wait to see if this final round of chemo can crush the disease that is attacking him or at the least slow it the hell down!
We will still be returning to Canberra every 8 weeks for pain treatments and to continue to look for any other remedies or treatments that might assist Aaron with reducing his pain and discomfort. And of course we hope that one day SOON they find the cure for this insidious disease.
Today marks 2 years since Aaron’s Transplant in Russia. I had planned to be writing an update on how great Aaron could be doing after HSCT, how he could’ve gotten his life back, or at the very least stopped the disease that is still ravaging his body and has stolen his quality of life.
Instead this is a hard post for me (Samantha) to write. For our family the struggles have not eased, the challenges keep coming, the battles seem to be continual and there is no relief or end in sight to the pain and suffering that Aaron is experiencing.
His Primary Progressive MS barrels on aggressively.
He has finished Mitoxantrone (Chemo), his last hope at slowing his MS down, he has tried experimental treatments for pain in areas no man should have to experience with little relief. There is nothing more than making it through a day, an hour sometimes a few minutes at a time 😦
Pain is used for torture, sleep deprivation too.
Watching Aaron when the Neuropathic pain is so bad he doesn’t want to go on is heartbreaking. No one deserves to suffer this much.
We are alone, often angry, frightened and daunted with the path that MS has taken our lives along – it is not one we chose and it is certainly not one we would wish on anyone 😦 It’s just not much fun anymore.
#WeNeedACure #FUMS #NOTFAIR #WhenTheFightIsTooHard
30th October 2016;
4 years since MS diagnosis at approx. 4.0-4.5 EDSS
2 years since HSCT in Russia at approx. 6.0-6.5 EDSS
Currently assessed at approx. 8.0-8.5 EDSS
The Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. It’s depressing and a harsh reality for Aaron and I as he has continued to decline. This MonSter of a disease continues to attack his body and progress aggressively no matter what we throw in its path.
Updates are getting harder and harder for me to write. I start to type and find myself deleting it all after thinking that people might find ‘a day in the life of PPMS’ far too depressing, or that it will be seen as whining or complaining, that it could be worse and we should look for the positive days.
But you know what, the things I do write are not even half of what we deal with on a daily basis and our reality is that it is only getting worse. I couldn’t even begin to write or express what 24 hrs in our life is like anymore. It seems our challenges are never ending and each day there is more to deal with.
Just one day for us can be filled with pain, hurt, anger, frustration, disappointment, regret, impatience, boredom, loneliness, jealousy, depression, fear, shouting, swearing, tears, feelings of uselessness, unanswered questions (particularly why?), sheer determination, occasional smiles, laughing at our misfortune (‘cause we’d be crying 24/7 otherwise) guilt and regrets.
Four years ago, we thought that an MS diagnosis was daunting but we also truly believed we would overcome it. Looking back now, Aaron’s diagnosis brought with it a readjustment of life, and for a few years we had real hope that we/he would be ok. All the information we read told us that MS was “not a death sentence”. MS Australia, the peak body supporting those with MS, told us in all their publications that “you can live well with MS”…but Aaron failed every drug they tried him on and progressed faster and faster… then we found hope in HSCT, we had the hope that Aaron would be amongst the success stories…… but no, Aaron’s aggressive Primary Progressive MS has other ideas and now the unforgiving continual increase in symptoms and disability 4 years down the track has brought with it the destruction of any quality of life and feelings of despair as hope fly’s out the window.
Hope is hard to hold onto when medical specialists have nothing more to offer, when you are told that it is a ‘shame’ you couldn’t get HSCT earlier, when there is nothing more they can do for you other than try (with no success to date) to manage your debilitating symptoms and trial a pain relief procedure on you that is not done anywhere else in the world. Hope is hard to hold onto when you know you’re just getting worse in so many ways you wouldn’t know where to begin to describe what the pain, disability and complete loss of independence feels like. Hope is hard to hold onto when there is a good chance you have left your bucket list too late and that maybe you should get your affairs in order……
* PPMS Mortality Statistics
– Patients with PPMS with Involvement of three or more neurological systems at onset resulted in a median time to EDSS 10 (death) of 13.5 years in contrast to PPMS patients with one system involved at onset where median time to death from MS was 33.2 years.
Aaron’s official ‘diagnosis’ in 2012 is still plagued with doubts. In those years, we have learnt a lot more about PPMS and looking back over 20+ years we can now clearly identify disease progression and evidence of symptoms (disease onset) as early as 20 years of age, Aaron believes he had others much earlier. His diagnosis was also masked for many, many, many years by workplace accidents, recreational motorcycling accidents and being a proud and determined man!
At the time of eventual diagnosis Aaron had at least 3 or more identifiable neurological systems failing. The figures above may be grim reading for some but they are slightly better than the predicted outcome when looking at his progression over the past 4 years gaining a point a year (you do the math….) Based on PPMS being such a bad disease and the rate of Aaron’s aggressive progression over the past 4 years, predicted mortality could be anywhere from 5-10 short years away …. or it could drag on painfully, debilitating, disabling and degrading him for longer.
Aaron always has and still does talk of wanting to grow old, he still has things he wants to do. The reality is that without assistance that I’m not always capable of giving, he may never get to do these things…. PPMS is a cruel and insidious disease and it has stolen his quality of life. To quote a fellow MS’er “This disease is horrid, doesn’t care who it takes prisoner, or how many lives are destroyed in its path (family members)”.
Living with a chronic debilitating disease is lonely, isolating and frightening
#whereisthecure #Fuck_You_PPMS #missingout #donthaveregrets #realitysux