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I thought it was time to give another update on my MND, as it is progressing fast (much too fast). Now would be a good time as I may soon lose the ability to type with my right hand.
I attended my MND clinic earlier this month and I was seen by 5 different specialities during a 2 hour period. If Henry Ford did medical clinics, this was what they would look like. One good perk of a long career in the ambulance service was having good contacts. They arranged my transport to the clinic so I got there 10 minutes before the appointment and I was returned home 20 minutes after I left the clinic, making the whole process feel a lot smother.
The main result of the clinic was confirmation of a major change to my breathing. My capacity to expand my lungs and exhale forcibly has fallen significantly. This was confirmed by blood tests, which showed increasing levels of carbon dioxide and reducing levels of oxygen. I have noticed less lung expansion and an increased respiratory rate. I now have a Non Invasive Ventilator (NIV), which forces air into my lungs via a mask over my mouth. At the moment I am only using it for 2 hours a day to get used to it, with the plan being to eventually use it over night. It is not the most comfortable thing to wear on my face but at least it is pretty quiet.
I had my stairlift changed last week. The original one from Stannah stopped at the top of the stairs, which meant my back was facing down the stairs when getting on and off it, this felt dangerous. The new one goes fully onto the landing, away from the opening. I paid £3,500 for the original one (fitted 5 months ago), but the company would only pay me 20% of the purchase price to have it back. I would sue them for miss-selling if I had the time or energy. The new one cost the same and I had to contribute another £2,000 towards it. I used a different stairlift company.
Once the new stairlift was in place I had 2 ceiling hoists fitted, one at the bottom of the stairs and one on the landing. I previously had one fitted in my living room and another one in my bedroom. My family can now move me through out the house, onto my bed and onto my armchair without having to physically lift me, which makes life easier for them.
My speech has also had a major deterioration, I am now struggling to finish sentences and I am also struggling to get my words out and be understood. Of all my difficulties, this is the one that really annoys and frustrates me.
My right arm has now started to weaken and it appears to be following the same pathway that my left underwent before I full lost use of it. I expect to fully lose it within 6 weeks or so. When that happens I will be fully paralysed from the neck down. The thought of this is not nice as I will be fully reliant on others for all aspects of my life. More loss of dignity!
I had raised £7,500 through a funding website and private donations to help towards the equipment costs, which has now been spent. My friends, family and ex colleagues have been doing fundraising events for me, with a national company doubling the final amount raised. This should cover any future needs.
The good point of the speed of the diseases progression is that the end will come quicker. This is the only hope that I can cling on to. As stated previously I am comfortable with my upcoming demise and I have no fear of it, I would just like it to happen as soon as possible. I am not writing about my issues to gain sympathy, I am doing it to give people an insight about how conditions like this affect the victims and families. I am so grateful to have a superb support network of family friends and professionals helping me through it. It would have be a nightmare without them.
If I provide another update it will have to be written using an eye tracking device. This will take some effort, so I cannot guarantee that this will happen, making this one possibly the last one.
79Blue aka Ian Jones
Thank you Ian.
It is a privilege to read these updates from you. I can offer nothing to make your journey any easier - but I appreciate the insight you have given and really admire your bravery and generosity. There is a whole community of posters on here (and their families and friends) who have much more understanding and much more empathy because of what you have written.
Ian you are one amazing person.
A great and inspirational update Ian.
Do you have a go fund me page?
Make sure your Mrs throws in some extra chillis into your noodles for you!
What a tremendous thing to do Ian, your posts are very much appreciated by all on here I’m sure and, hopefully, they have some therapeutic value for you. I felt genuinely humbled reading that.Originally Posted by 79blue
I thought it was time to give another update on my MND, as it is progressing fast (much too fast). Now would be a good time as I may soon lose the ability to type with my right hand.
I attended my MND clinic earlier this month and I was seen by 5 different specialities during a 2 hour period. If Henry Ford did medical clinics, this was what they would look like. One good perk of a long career in the ambulance service was having good contacts. They arranged my transport to the clinic so I got there 10 minutes before the appointment and I was returned home 20 minutes after I left the clinic, making the whole process feel a lot smother.
The main result of the clinic was confirmation of a major change to my breathing. My capacity to expand my lungs and exhale forcibly has fallen significantly. This was confirmed by blood tests, which showed increasing levels of carbon dioxide and reducing levels of oxygen. I have noticed less lung expansion and an increased respiratory rate. I now have a Non Invasive Ventilator (NIV), which forces air into my lungs via a mask over my mouth. At the moment I am only using it for 2 hours a day to get used to it, with the plan being to eventually use it over night. It is not the most comfortable thing to wear on my face but at least it is pretty quiet.
I had my stairlift changed last week. The original one from Stannah stopped at the top of the stairs, which meant my back was facing down the stairs when getting on and off it, this felt dangerous. The new one goes fully onto the landing, away from the opening. I paid £3,500 for the original one (fitted 5 months ago), but the company would only pay me 20% of the purchase price to have it back. I would sue them for miss-selling if I had the time or energy. The new one cost the same and I had to contribute another £2,000 towards it. I used a different stairlift company.
Once the new stairlift was in place I had 2 ceiling hoists fitted, one at the bottom of the stairs and one on the landing. I previously had one fitted in my living room and another one in my bedroom. My family can now move me through out the house, onto my bed and onto my armchair without having to physically lift me, which makes life easier for them.
My speech has also had a major deterioration, I am now struggling to finish sentences and I am also struggling to get my words out and be understood. Of all my difficulties, this is the one that really annoys and frustrates me.
My right arm has now started to weaken and it appears to be following the same pathway that my left underwent before I full lost use of it. I expect to fully lose it within 6 weeks or so. When that happens I will be fully paralysed from the neck down. The thought of this is not nice as I will be fully reliant on others for all aspects of my life. More loss of dignity!
I had raised £7,500 through a funding website and private donations to help towards the equipment costs, which has now been spent. My friends, family and ex colleagues have been doing fundraising events for me, with a national company doubling the final amount raised. This should cover any future needs.
The good point of the speed of the diseases progression is that the end will come quicker. This is the only hope that I can cling on to. As stated previously I am comfortable with my upcoming demise and I have no fear of it, I would just like it to happen as soon as possible. I am not writing about my issues to gain sympathy, I am doing it to give people an insight about how conditions like this affect the victims and families. I am so grateful to have a superb support network of family friends and professionals helping me through it. It would have be a nightmare without them.
If I provide another update it will have to be written using an eye tracking device. This will take some effort, so I cannot guarantee that this will happen, making this one possibly the last one.
79Blue aka Ian Jones
I am having it tomorrow, so I hope so.
Agree 100 percent
The fundraiser page is still going but my last donation was a couple of months ago.
https://gofund.me/356ec423
Thanks for updating us. We're all thinking of you.
Wishing you all the best and thanks for your update. As mentioned above please post links to any fundraising events and I’m sure we can all help out.
Echo all the above and it's a humbling read and should make us all appreciate the important things and people in our lives.
I wonder perhaps if a fundraising page could be highlighted so we can help out a fellow bluebird?
I really hope we get to read more updates, however you may write them and I hope you feel as mentally and physically peaceful as you possibly can.
Thank you for taking the time to write it. I am sure it is appreciated by everyone on here.
Good luck Ian, I really hope progression is as close to the chosen wishes as possible, thanks for the update, it puts things in perspective.
It's so uplifting that you record your experience of this terrible disease in such an open and frank manner.
I doff my cap to yourself and all those around you involved in your care.
Out of interest, what are the options in terms of euthanasia? Are there ant options or would you have to travel?
I did consider going to Dignitas in Switzerland, but the process is long winded. You have to apply to become a member first. Once you have membership you can then apply for euthanasia. This requires lots of paperwork, medical reports and psychiatric evaluation. This can take 4 months and if accepted it would cost approximately £10,000. On the day it happens you have to able to self administer the drugs.
I did not do this due to the cost and not knowing whether I would be physically able to self administer by the time it was available. I also would not want a family member to undergo Police scrutiny on their return if they travelled with me .
As I mentioned in an earlier post I did try taking my life with high levels of morphine which unfortunately did not work.
Your vocation to continue to help others by your posts is truly inspirational 79blue.
It's worth us all remembering that we are all just passing through.
God speed my friend
MND update part 2.1
After reading my post again I realised that I forgot to mention one of the worst aspects of my condition.
When you have lost most of the things that you enjoy, you hope that you can still some aspects of your life that keep you going. For example I am no longer able to get out of the house, go for a walk, go down the city, have a pint in the pub or drive my car. All I had left was being with family, watching TV or films and eating good food.
When I was first diagnosed my consultant told me to eat as much as I can and not to worry about what I eat. Apparently my body now will quickly burn calories due to the disease process. This was the only good news I had. Unfortunately it has now affected my taste buds and sense of smell. Food that I used to enjoy now tastes disgusting, for example fried foods, burgers, sausages and baked foods. I used to enjoy cheese on taste but the smell of it now puts me off. Fortunately I can still enjoy spicy foods and Chinese dishes. I allow myself one Chinese takeaway a week.
I have noticed a few new donations on my GofundMe page. I had not had any for a couple of months so I suspect they have come from members of this site. So I would like to thank those of you have donated.
Ian.
Your dignity shines through every line, Ian, whilst humbling me. Yes, we really do have so much to be thankful for.
StT.
<><
All the best Ian
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