Yesterday was the two year anniversary of my diagnosis, I wanted to share with you the effect that MND has had on my body. A friend of mine has kindly put together a short video briefly showing life before MND and then how it has taken over and stripped me of my independence in just two short years.
The next step of my journey is to have the operation for a feeding tube (RIG). That doesn’t mean that I have difficulties eating. Far from it! But because of my breathing issues, there is a window of time when it’s safe to do such an operation. So I’ve decided to go ahead, and I’m booked in for the end of this month. I still don’t really know if it’s the right choice for me. But I would hate to regret not having it later on and end up really needing it.
After asking if it would benefit me to get it and keep me around longer, my MND team wouldn’t put any timeframe on my life expectancy. They could only say that I’m in the “later stages”. I have to admit that I do disagree with this statement, but perhaps we have different ideas of what “later stages”looks like.
An update on the WAV – I discovered that if it is one where I am seated behind the driver and the passenger seat, instead of being in the passenger seat area, then the upfront payment is considerably less. We are looking at around £5000 instead of £10-20k. As predicted I wasn’t successful in getting any help for that.
I had a home demonstration of a WAV recently. But unfortunately my wheelchair didn’t fit. So I’m waiting on setting another date for another demonstration of a different WAV. If I didn’t have toes……. it would have fit! We will find something.
An update on medical cannabis – A medical cannabis clinic opened in Stirling earlier this year. So I registered with them and recently got an online appointment. I have been using CBD and THC oils for a few weeks now. It is greatly improved my sleep. I’m only waking up once, sometimes twice. I’m not getting the same intense burning sensation in my feet as often.
https://www.sapphireclinics.com/?gclid=EAIaIQobChMIpIbC0Nat8gIVkYBQBh3N7gsMEAAYASAAEgJ23_D_BwE
It’s interesting that I meet the criteria if I’m happy to pay for a private prescription. I don’t meet the criteria to receive it on the NHS. You would think that having MND would be the golden ticket for such a prescription!
Two years ago I knew very little about MND but now MND is being talked about more on the tv and in the news. The #United2EndMND campaign was started with the aim to increase the UK Government’s funding for MND research. It’s currently less than £5 million a year.
People living with MND qualify to receive a disability benefit called PIP to help with the additional costs for mobility and any extra help they might need to pay for. If 1000 people out of the 5000 living with MND are receiving PIP, that costs the government roughly £7 million+ per year. More than they invest in MND research!
In the height of the AIDS crisis, more people in the UK died of MND than of HIV. HIV claimed the lives of around 1200 people per year, reducing down to 300-400. Approximately 2000 die from MND per year. So much money was spent on research into HIV and now it’s no longer a death sentence. People can live a normal life with HIV. If MND had that kind of investment, we could be seeing treatment options and maybe even a cure.
MND Scotland has joined together with the My Name’5 Doddie Foundation and the MND Associations of England, Wales and Northern Ireland. A petition was started asking the UK government to invest £50 million over five years into MND research.
There were more than 110,000 signatures on the government petition which was then discussed and debated in parliament. So if you are reading this and you were one of those people who signed it, thank you!
A few of the MND warriors have put together a patient letter for the government to allow our voices to be heard. It will have many signatures on it from people living with MND in the UK, including myself.
The Sunday Express have been running many articles on the campaign and interviews with people who have MND. My interview is out on August 15th.
I’m hopeful that if more money is put into research, within the next few years I could be on a drug trial that’s keeping me alive. We could be seeing potential treatments. I hope I’m still here to be a part of that.
Thank you to anyone out there who has done some fundraising of their own. Whether it’s the kilt walk, a bake sale, a run, a cycle, a bungee jump. It means so much!
If you haven’t done anything yet…….what are you waiting for?! https://www.mndscotland.org.uk/fundraising/events/
Jo’s Journey with MND 