No. 186. 'Two seconds ahead.'

Got to keep two seconds ahead.

Chris had an appointment today, his lovely MND nurse Tracey managed to get it brought forward as Chris was having a few issues with his breathing. I was never entirely sure whether the problems were with his lungs or higher up.

We had the usual wait. The doctor did the test for his blood gases as the nurse was having problems with another patient. Whenever someone asks Chris how he is he always says he isn't too bad. I am sure, hopefully way in the future, he will still manage to put his thumb up on his death bed !! I told the doctor that wasn't quite the case and that Chris was having some breathing problems and that we even dialled 999 on Sunday and only then Chris did tell him what the problem was.

We then had to wait about 20 minutes for the results to come back and then went in to see the doctor again.

He asked Chris lots of questions about the problems he was having. Chris said he feels like his throat is tightening and he can't take a breath in as well as finding it hard to breathe when lying down. The doctor told him that the blood tests showed a small rise in bi carbonates (CO2), but they were still at a safe level. He said he could help Chris out with his problems at night with Non Invasive Ventialtion and agreed his chest muscles were getting weaker. however he said that because Chris had quite bad bulbar problems in the throat area with his swallow, speech etc, he was most likely having spasms in the larynx and pharynx and that having NIV could make that worse. He was prepared to electively admit Chris in a couple of weeks to set it up, but wasn't convinced it was the best thing for Chris yet. He admitted that he knew very little about MND and recommended Chris spoke to Tracey to see what she could advise. Chris decided against going for the NIV just yet so the doctor will see him again in two months to review him.

When we got home I rang Tracey, luckily I caught her in the office. She knew straight away what the spasms were about and what to do about them. She explained that normally if someone inhaled a bit of dust or something similar then we would just cough it up. Because Chris's cough is quite weak he is unable to do this so any irritation, however minor, sends the throat muscles into spasm. Tracy suggested trying Lorazepam under the tongue, but I told her that we tried that the last time and it didn't work, so she said there was a stronger drug from the same family, which I have forgotten the name of, but it began with M, that can be used. It is given to people who have endoscopes. It is also put into the mouth to be absorbed through the cheek, she did say it was also an amnesiac! Needs must I guess. Tracy said she would get in touch with Chris's GP to prescribe it and also the district nurse Matron, to arrange someone to come out and teach how to administer it.

Well I guess this is sort of good news. It is good news that although his chest muscles are slowly deteriorating, they still aren't at the point of Chris needling assistance to breathe, so sigh of relief there.  Also while this new drug Chris is being prescribed seems a little scary, it will only be used during a spasm attack and if it relaxes him enough to recover then great.

Gosh this is all like a race, a real race for life, those with MND versus the disease, always running to keep two seconds ahead. One day, eventually, MND WILL take over and they WILL literally run out of breath, so the fight is there ...always ....

 We just have to do our best to keep them two seconds ahead.

* Edit* I believe the drug may be Midazolam.