3rd Feb, 2017
The last few months things seem to be getting harder and harder for all of us to deal with. Aaron’s very Aggressive Primary Progressive Multiple Sclerosis is forging on at an alarming rate. It continues to disable and debilitate him with pain, increasing symptoms, and horrible side effects from countless medications.
Each day we seem to be faced with new trials and tribulations an all this on top of the challenges we were already dealing with the day before. We are finding it hard to hold on to hope that they might find a cure in Aaron’s shortened lifetime, or that some medication or treatment will miraculously be released that could really help him. Aaron has said that even if a cure or treatment is found the chances of it being available to him are little to none thanks to clinical trials and Govt red tape. Meanwhile PPMS is ravaging his body and he is barrelling down the EDSS scale at an alarming rate.
Aaron has increased on average 1 point on the EDSS scale each year over the past 4 years since he was finally labelled with his MS diagnosis… see EDSS picture for point description.
Put simply; 0 = No Disability & 10 = Death from MS
Dec 2012 :- 4.0-4.5 (at time of official diagnosis)
Sep 2014 :- 6.0-6.5 (at time of HSCT in Russia)
Dec 2016 :- 8.0-8.5 (Currently almost a firm 8.5) ……
There are no more treatments we can try to even just slow down Aaron’s aggressive PPMS, all we can do now is manage his increasing disabilities, his existing and new symptoms, and his increasing and excruciating 24/7 pain. Dr’s have begun using the term ‘managing the end stages of the disease’, just a nicer way of saying ‘it’s terminal and we can’t help anymore’.
Being realistic we know things aren’t going to ‘get better’ for Aaron, there is no reprieve or ‘break in the clouds’ when you are fighting an aggressive progressive neurodegenerative disease, particularly one that has no cure and nothing you have tried so far is stopping it. No amount of being positive, of having hope, of being willing to try absolutely anything has even slowed this bastard disease down. It is heartbreaking, soul destroying and all together unfair to watch someone still so young, losing so much, so fast.
Our schedule follows a six-week cycle that on one round involves Catheter changes and nursing visits and the other loop see’s us travel to Canberra for pain treatment. The Botox injections seem to ‘take the edge off’ but are not a complete success. Aaron is still on excessive amounts of painkillers, neuropathic meds, and over the counter pain meds in between, have I mentioned they use pain for torture. He is fatigued, frustrated and in pain from the moment he is helped out of bed every day, he has trouble sleeping and regulating his body temperature.
Most, if not all of my days are spent chasing Service Providers through NDIS, arranging assessments for equipment or said services that we are still struggling to set up. Speaking to OT’s and Physio’s, discussing our situation over and over, our needs and requirements, trying to push for help, assistance and services. Liaising with Dr’s staff for new or follow up appointments. Emailing or calling clinics for assessments and appointments. Ordering ‘MS’ supplies including continence aids, catheters etc. etc. etc.
Coordinating the 35 medications for either blister pack or day packs. Fun times.
Over the last few weeks we reached a few milestones; 25 years together, 20 years in our home, 19 years of Marriage, and our son started his final 3 terms of Year 12 at High School. We finally arranged and had modifications done to Aaron’s power wheelchair and it was returned this week – we are hoping to be able to do a few more small mods inside and to our vehicle so we can accommodate the powerchair size and help Aaron have a little more independence as his disabilities increase. Justice was served last month through the NSW Civil and Administrative Tribunal and orders were drawn in our favour for a full refund of the bed (by a fast-approaching date), however we are still waiting for said refund and contact from the company so they can collect the bed. In the meantime, Aaron is back in the single hospital bed and I am in the spare room. We cannot wait for this saga to end once and for all.
Aggressive Primary Progressive MS is a cruel debilitating neurodegenerative disease that has huge impacts emotionally, physically and mentally on all three of us every single day. Some weeks we struggle through taking it one day at a time, some days it’s one hour at a time, and some hours it really is one single minute at a time. Make your minutes really count, you never know how many you might or might not have left.