7th October 2015
It’s not just ‘MS’ …
Aaron has Primary Progressive Multiple Sclerosis. Only 10% of people with MS have PPMS. There are no DMD’s (Disease Modifying Drugs) available for PPMS. There is nothing Neurologists can offer, nothing, nadda, zip, zilch, zero…..other than to offer to assist in making the person as comfortable as possible (i.e. dose them up with antidepressants, nerve and or pain medications, sleep tabs and countless vitamins) ……. this is not a pleasant existence for anyone let alone a person already suffering with a debilitating, chronic and aggressive disease so young in life.
For a moment if you would, put yourself in Aaron’s shoes; he is about to turn 43, he has a wife and a 16 year old son that he can’t provide for. His passion, his hobby and the only job he has known and loved for over 20 years involved problem solving, using his mind and cognitive skills, riding and or driving motorcycles and cars & working with his hands mechanically. Thanks to PPMS none of these things are possible for Aaron anymore. His symptoms are as follows:
He is 100% confined to his wheelchair; he has no movement in his left leg & very little in his right (both are very weak with little to no muscle strength).
His feet and ankles are so swollen only one pair of loose shoes fit.
His hands are cramping and losing strength along with his arms.
He experiences pins and needles and loss of sensation in his fingers and hands.
His hands and feet have constant times of severe cold (touch them and you would think they had been in a bucket of ice!).
His memory and his cognitive processing fail him constantly and he is irritable and uncomfortable.
He has speech problems, including slurring (dysarthria) and loss of volume (dysphonia).
He has begun to experience swallowing problems — referred to as dysphagia
He gets stiffness and a wide range of involuntary muscle spasms in his legs and arms.
He suffers from hyper sensitivity (heightened touch and pain etc) as well as noise sensitivity, also known as Hyperacusis.
He has a permanent catheter that needs to be changed every 6 weeks causing extreme pain and discomfort and his bowels are shutting down.
His headaches have lessened but he still gets excruciating pains that don’t last as long but appear to be horrifically painful.
He has hot and cold sensitivity.
He has MS fatigue so is always exhausted.
He can’t sleep so is always exhausted.
He has become dependent on his wife for personal care and struggles with daily tasks.
[I very well may have missed some symptoms…..]
Now, along with all of that you have fought hard for a treatment that isn’t available in your country but that is proven too, can and does halt the progression of MS (HSCT). Only you got treatment overseas with the help of fundraising just too late in the stage of your disease progression. Now it appears you are not in the 60-80% of success cases. You are advised to get follow up Chemotherapy with the strong possibility of being brought into the success stories, changing your statistics. If you get this treatment, in your mind you have a chance of slowing or stopping the disease progression – there is hope. However the country you live in, a country known as ‘The Lucky Country” won’t approve this treatment for you. They say MS isn’t killing you……how do you think you would react?? I don’t think you know that until you are faced with it and I don’t wish it upon anyone.
One of the most common things Aaron and I hear that irritates us to no end would have to be “I know someone with MS” often closely followed by “they are doing OK” …. “they are on such and such DMD; (Disease Modifying Drug)” … “they work” … “they manage their family life well” … “they participate in sport & or physio” … “they aren’t letting MS rule their lives” or things pretty similar … we also hear “at least MS doesn’t kill you”?!?!? … “at least you don’t have cancer” … “it could be worse” … “you should stay as active as possible” … “have you tried” … “be thankful for what you have” (yep ok, did you know with PPMS & other types of MS that you never know what the next hour might bring!?) etc. etc. etc. – I think you get the idea.
Fact: No two cases of MS are identical, whether they are RRMS, SPMS, PPMS etc …. No two people have identical lesions in size or location, they are yet to understand why PPMS often have less lesions yet higher disability and faster disease onset.
I believe it’s important (for those that are interested or are going to comment or make suggestions) to understand that there are 5 types of MS;
** Relapsing-Remitting MS Relapsing-Remitting MS is the most common form of MS. Approximately 80% of people diagnosed with MS in Australia will be diagnosed with Relapsing-Remitting MS. This form of MS is characterised by unpredictable relapses (exacerbations, attacks) during which new symptoms appear or existing symptoms become more severe. This can last for varying periods (days, weeks or in some cases months) which is followed by partial or total remission (recovery). The time between relapses varies. For some their MS may be inactive for months, for others even years at a time.
** Secondary-Progressive MS (SPMS). In certain cases, over time, MS people with Relapsing Remitting MS can progress to Secondary Progressive MS. In this case there is progressive development of disability often with superimposed relapses. In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions.
** (Aaron fits here):
** Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. This form of MS is characterised by a lack of distinct attacks, but with slow onset and steadily worsening symptoms. There is an accumulation of deficits and disability which may level off at some point or continue over months and years.
“Because of the aggressive nature of progressive multiple sclerosis, and the extreme difficulties in treating it, progressive MS remains a frightening proposition for patients and a confounding problem for the physicians trying to treat them. Often, treatment is limited to symptom management because none of the approved MS treatments, most of which work in one way or another to reduce inflammation in the central nervous system, have any positive effect on progressive MS patients who typically exhibit little or no CNS inflammation. One of the prevailing mysteries of MS is why, in the face of this lack of inflammation, the disease continues to progress without hesitation.” From: The Wheelchair Kamikaze PPMS
** PPMS Mortality Statistics
– Patients with PPMS with three or more neurological systems at onset resulted in a median time to EDSS 10 (death) of 13.5 years.
– Patients with PPMS with one system involved at onset where median time to death from MS was 33.2 years.
`*~ *`Aaron’s official “diagnosis” in 2012 is plagued with doubts…..knowing what we know now and looking back 22 years we can clearly identify symptoms at 21-22years of age. His official “diagnosis” was masked for many, many, many years by workplace accidents, recreational accidents motorcycling and being a proud and determined man! At the time of “diagnosis” he had at least 3 or more identifiable neurological systems failing. Either way predicted mortality for Aaron is 52.5-53.5 years old ….. that’s only 10 short years away.
Apologies if anyone finds these figures grim reading. Unfortunately, MS is a bad disease, particularly PPMS, and these figures make that very clear.
** Progressive-Relapsing MS (PRMS). A rare form of MS (5%) This form of MS is characterised by a gradual progression of disability from the onset of the disease and is accompanied by one or more relapses
**Malignant Multiple Sclerosis (Marburg Variant) – rapidly progressive and malignant form of MS.
No-one just ‘has MS’…. MS isn’t just ‘MS’!
9th October 2015
The 9th of October 2015 marks 12 months to the day for Aaron from his Stem Cell Transplant in Russia. It is a day that we had hoped would be filled with ‘1st Birthday’ celebrations and joy….
We had hoped to have halted Aaron’s aggressive Progressive MS with HSCT like so many of our Warrior Family.
Life has been a bloody hard for us, the challenges seem to be never ending…. this last 12 months has been the toughest yet….not only has Aaron been recovering from HSCT, he deals constantly with no reprieve from his unforgiving and increasing MS symptoms but we have also faced huge brick walls and obstacles getting the advised follow up medical treatment in our own country to help him…. but we are a family of fighters and survivors and we don’t give up easily!
This video is for the strongest fighter of all, our survivor, our Warrior and my biggest hero in life – Aaron ❤ You are so brave and determined and strong and you have battled on against so many odds, sometimes with a frown and a growl but we have also heard your laugh, seen your radiant smile and witnessed the bright spark of love you have for Jake and I in your eyes.
Our battle against MS isn’t over and our fight for enjoyment and quality of life continues together. We love you & will ALWAYS be here for you Aaron ………….. and I will try to fix you ❤ xxx Sammy xxx
22nd October 2015
One year on from Aaron’s HSCT in Russia and the challenges have not eased up – we are a strong family but I believe we have coped with more than most…. here is an update from Aaron’s One Year Transplant Anniversary in Sam’s words.
6th December 2015 – 427 days post-transplant
I have been hesitating to post an update here for a few weeks now. Maybe because we don’t really have great or even good news to tell like most HSCT recipients, days pass as we wait (wait for my test results and wait for the opportunity for Aaron to at the least try the post HSCT Chemo Dr F recommended months ago). Maybe I don’t post because deep down I know that no one really wants to hear that Aaron is not stabalising as hoped, his symptoms aren’t easing or even stable, his MS is still progressing and that he is getting worse….who wants to hear about all the bad bits, the daily struggles, the constant and unforgiving mental and physical strain and pressure the three of us deal with each hour of each day? Yet I do feel we owe it to all our supporters to fill in what’s happening and where we are with Aaron’s recovery post HSCT and to answer any questions anyone might have.
I would like to re-iterate that we are still staunch supporters of HSCT as a front-line treatment to HALT MS. We strongly believe that HSCT has the greatest chance at stopping this insidious debilitating disease when the person with MS (pwMS) is RRMS or early stages of transitioning to SPMS & even a smaller percentage of early disease stage PPMS. Perhaps the most important requirement being that the pwMS has an EDSS of below 5.0 – 5.5 max (ie ambulatory) at the time of treatment, the lower the edss the better the results. Being below 5.5 edss gives the respondent >80% chance of not only halting disease progression but also experience significant reversal (improvement) of their MS-related disability and symptoms. Aaron was realistically at 5.5 edss when we began fundraising in mid March 2014 ….. by the time he we traveled to Russia for HSCT only 6 months later Dr Fedorenko gave him an edss of 6.0-6.5 with 70% chance of halting his aggressive progressive disease …… On returning home Aaron did everything right, he was conscious of his immunity but also determined to rehabilitate and use exercise physiology to assist his recovery. He was aiming at all times for improvement and for a short time he saw what we all thought at the time appeared to be small improvements. On re-assessing the ‘improved’ Aaron (now he is 7.0-7.5 edss) it became apparent that in the very early day’s home he was still functioning on the high dose of Methylprednisolone (corticosteroid) he had in Russia. Not only did they really work at temporarily increasing his strength and stamina but at the time he also had symptomatic improvement following recovery from the acute chemo effects of HSCT.
On top of our constant battle dealing with Aaron’s progressing MS, as many supporters already know, I myself (Samantha, the wife, the mother, the carer, the fundraiser, the #1 supporter bearer of the brunt of everything) am dealing with my own mortality and ongoing health issues. This has placed more unnecessary strains on our already stressed family unit.
Meanwhile, we are still waiting for assessments and applications for modifications to our house to enable Aaron to live independently in his own home with his family. This is proving to be a drawn out and aggravating process – applications are on hold for any funding due to the transformation across to NDIS hence we are left to suffer longer. Without assistance Aaron is trapped inside our tiny unsafe house, unable to be independent he is trapped bashing thru the doorways and our walls and can’t get outside. He is no longer able to use any of our bathrooms with any safety – he falls regularly and requires assistance for his personal needs – all of this is demoralising, emancipating and unnecessary – all creating more stress and strain when he is already dealing with worsening disability and disease progression (and the worry and concern for me and my health all while caring for him)….. Disability really is for the wealthy 😦
12th Decmber 2015
Aaron has ‘Creeping Paralysis’ – the Author at Wheelchair Kamikaze Marc is so correct, it not only flows better off the tongue than ‘Progressive Multiple Sclerosis’ but is also a terrific descriptor of the effects of Progressive MS – the gift that keeps on giving 😦 Just like Marc, Creeping Paralysis has impacted not only Aaron’s body, but his mind and spirit as well.