2015 in Summary
2015 was a tough year for a lot of people. The ongoing drought has put increased pressure on the farming community and related industries. The SA government continues to embarrass itself with outrageous policies and statements, causing confidence and the Rand to fall to an all time low. Unfortunately ALS/MND still has the medical world “scratching it’s heads”, but as a result of the support and awareness, the progress made in research and strides made towards a cure, have been significant.
Combatting the Disease
We have often promised that we will do everything possible to “get better” and in the process contribute towards finding a cure. I am comfortable that we have kept our promise this past year. We have dedicated most of the year speaking to the best Doctors & neurologists in the world, travelling to 5 continents, trying numerous medicines, therapies and supplements. I have swallowed approximately 5120 pills, had over 24 IV infusions and over 150 injections in various forms.
My Personal progression
My 1st symptoms were in April 2012, official diagnosis in Jan 2013. As of January 2016, I am able to talk, walk, dress myself, drive a vehicle and get through most days as a healthy person. My disease progression is “slow” comparatively. What we don’t know for certain is why. It could be that we were fortunate to get a slow progressing type of ALS, it could be that I am younger than most, but my personal belief, is that a combination of diet, lifestyle, medicine and therapies have all helped. I cannot say for certain which one specifically but hopefully we can work it out.
My Daily Challenges
It feels like my “small” specific function muscles have been affected the worst: writing, cutting my nails, holding a knife and fork properly, turning pages in a book, doing up buttons, maneuvering a computer mouse, shaving. The ‘balancing’ muscles in my feet and legs are compromised which make uneven ground and stairs a challenge. If I approach things slowly, I can normally do them unassisted but I have had a few awkward falls when I haven’t been concentrating.
Affects on the family
As a result of my functionality being clumsy my wife Paula has had to shoulder most of the physical responsibility and we have an additional domestic to assist with the demands of the children. Molly (4 yrs old in April) is becoming increasingly aware of my condition and often asks “ Dad, are you alright?” and “Dad, don’t fall”. Not being able to hold, help, lift, tickle, dress, put shoes on my children and not being able to adequately show affection to Paula and the girls is my biggest frustration and sadness. I am blessed and proud to have Paula as my wife as there are times where my/ our emotions are tested to their limits and she deals with it all with such bravery.
What ALS gives to our Family
My family and I have been shown such incredible kindness from so many people and generosity that knows no boundaries. We are sincerely blessed with true friends that have showered us with the real “stuff” that makes people human and gestures that have helped lighten the burden of this illness.
ALS has put things into perspective and taught my family how to discern the important from the trivial. Apart from your family and your health, very little is needed to make you happy and it’s not the number of years in your life that counts, but the life in your years.
Thank you to Richard from Fordoun (http://www.fordoun.com) who kindly arranged a very special 2 nights at Rocktail Beach Camp http://www.wilderness-safaris.com/camps/rocktail-beach-camp and Derryk who helped us arrange 2 incredible nights at Phinda where Paula’s sister Amy has just qualified as a ranger and my cousin Cilla heads up the research.
2016 Looking Forward
I am both excited and terrified at what 2016 holds. Excited that this year might be the year that a cure is found and that we stop the progression of this illness. Terrified that 2016 is not the year and what this may mean.
Currently I follow the following medicines & therapies
- Rilutek-only FDA approved drug for ALS
- Baclofen- helps with cramping and spasms
- Curcumin and cannabis oil- helps with inflammation and sleeping
- Al serine- balances uruic acid levels believed to inhibit ALS progression
- Dextromorphan-helps with bulbar symptoms, speech, swallowing etc.
- Weekly: Reflexology, sports massage, Pilates
I think it is so important to have a purpose and goals. There is a danger to start “easing off” as things become more difficult. The farm allows me to do what I love and gives me the opportunity to “pop” home and see my girls, whilst still contributing and developing new projects.
We have had to sell our double story home in Nottingham Road because of the stairs. We are very excited to have started building a more practical, consolidated single story home and hope to move in early this year.