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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
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
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