Now that my capacity to earn and support my family is drastically reduced I am relying more and more on family and friends to assist us financially with costs directly borne as a result of the disease.
By reducing both physical and emotional stress I have found that I can concentrate fighting this disease. While stress is in any form is inevitable, unfortunately I have found that in times of stress the disease seems to accelerate. The reduction of physical and emotional stress does allow my body to better respond to treatments.
With the help of my family I have set up a trust where donations and fund raising will administered. Already, I am needing support in the following areas.
This is the most critical and yet the most frustrating part of having a disease such as mine. I now need help with ALL aspects of living. Little things that we take for granted like washing yourself, going to the toilet, shaving, doing your buttons and zippers up, feeding and watering myself all need assistance. With Zara mainly performing “crowd control” with Harriet, Damian and Margot a Carer has already become an essential part of my life. The care I currently receive will at some point extend to 24 hour care. Although the government currently pay $11 per hour for a carer, the quality and consistency of care that I need has meant that I need to pay $20 per hour. The difference in cost is not picked up by any agency. As you can imagine, the sheer ongoing cost for this in itself, let alone the need for 24 hour care is hugely stressful. Although with Mum still working and Dad reusing teabags they are helping enormously in this area, but I have asked the Trustees to ensure that any monies not directly put toward my other needs go toward ensuring I continue to receive a better quality of carer.
With 3 preschool children it is not feasible to convert our existing car as Zara undertakes extensive “ferrying” duties. Those of you that are parents will know that “it is still all about them”.
In order to maintain an active role with my family and friends I need to purchase a wheelchair van. The approximate cost of this is $25,000.
Although all my muscles are wasting away I still have feeling throughout my body, which if not exercised causes me significant discomfort. To alleviate this discomfort I have muscle and deep tissue massages every week. COST $75 per week.
Through much research and discussion with other MND sufferers worldwide (thank heavens for the internet!) I have found that the disease progression can be slowed through using alternative supplements. While success is very different from person to person I have put myself on a strict regime of supplements. COST $300 per month.
I have also found that while attention to my physical wellbeing is critical, my emotional well being is just as vital in order to fight this disease. I have identified and undertake some alternative therapies, for instance Reiki which I feel are in some way helping me. COST $100 per week.
Although muscles in my throat are now being affected I am still able to talk (albeit with some difficulty). I have come to terms with the fact that at some point I will need significant technological help to communicate. With the advances in technology being so rapid it is difficult to indicate specifically what I will need. The technology available today which will enable me to talk through a computer via either a head mouse or eye mouse costs in the region of $10,000.
I am quite literally imprisoned within a body that can’t do what my brain tells it to do, and although I have an active imagination (Zara would say too active), I am beginning to notice and become very frustrated with the inability to do small things like read a book or change a TV channel. I guess some would call it a luxury (and in fact when making this point to Social Services that is exactly what was told to me), but if you imagine yourself as not being able to do ANYTHING physical suddenly the small things are important.
Having SKY TV with a special remote enables me to watch movies and follow my favourite sports. Talking books have become an important part of my life. COST $200 per month.
It is difficult if not all but impossible to ask for help outside my family, A charitable trust has been suggested as a good avenue for those who want to help but don't how to, or even what any donations or fundraising might be used for. Zara and I continue to be humbled and extremely grateful to those friends and family, friends of friends and work colleagues who, upon finding out about our circumstances have surprised us with their level of generosity and the depth of goodwill.
While knowing that my life is now limited the knowledge that we are surrounded by such love and support is a huge strength to me.
please feel free to get in touch with me any time using my e-mail address. We live in Christchurch, New Zealand.
My e-mail address: matthew@matthewfrasermndcharitabletrust.co.nz
The Trust has harnessed the power of PayPal to accept donations by credit card on my behalf and deposit them into the Trust Account. If you would like to help with one of the areas of need please indicate in the “comments” section of the PayPal page. That way, the Trustees will direct your donation to the area you would like it to go." If you would prefer to make a donation directly to the trust account the details are as follows:
Bank: ANZ Merivale
Account Name: The Matthew Fraser MND Charitable Trust
Account number:01-1188-0096167-00
Each month in my News section I will indicate how fundraising regarding the specific areas is going.