As much as we try to get on with life, MND is always looking over our shoulder. I`ve noticed the past week that Chris is choking a little more often. One of the things he choked on was Weetabix, which I mentioned before. The dietician and speech therapist said that it was a good choice of cereal to eat, but maybe it isn`t for Chris. I bought a box of Ready Brek today, which Chris didn`t really approve of, but I thought it might be worth a try for him. The other things were baked beans, and it turns out that they were on the list of foods to avoid, so maybe they will be off the menu now. I think he can live with that. He doesn`t choke all the time, but when he does, it is a bit scary.
Chris was planning to tell the speech therapist in September that he wanted to be referred to have a peg fitted (the tube that feeds you through the tummy wall), but maybe we`ll have to see if he needs to be referred sooner. That is freaking Chris out a bit and I understand why, but it needs to be done before he needs it and while he is still reasonably well. Of course he doesn`t want it, who would, but he knows it is for the best. It is a big step to take. We just aren`t sure how long the referral to surgery will take and the progress of this disease is a little unpredictable. I guess the speech therapist can advise us on that.
I have no idea how Chris will cope in the future when he can`t eat orally at all, I can`t imagine that, never to have food in your mouth or be able to chew or swallow it. Maybe that won`t fully happen, I don`t know, we are still learning about this. It is such a cruel disease. It happens because the muscles waste in the tongue, mouth and throat and Chris will eventually lose the strength to swallow. This is why his speech is affected too. I guess there is a transition phase of eating soft foods first. The speech therapist said thicker drinks are better too. I never knew speech therapists dealt with stuff like this, I just thought they helped with his actual speech. We stupidly thought, when he was referred to one, that they would be able to help make his speech clearer, but of course we now know that the damage is irreparable. The speech therapist is there to monitor his speech and swallow and inform him about things like the peg feeding and the types of technology to help with communication when the need arises. This has been a steep learning curve for sure.
So much to learn, that we`d rather not know, so much to face that we would rather not face.
One of the reasons I am so open about what is happening to my husband is to get the facts of what this disease does out there, to educate others as we go through this, those who have no knowledge of what MND does. It isn`t always easy to be so frank and I question what I am doing every time I write, but I just have to hope that it will help a little bit to get the MND awareness message across.
*I wanted to add the link here for the Solent Swim which includes a
short video by Ian Pratt, a fellow MND warrior. That is what people who
have MND should call them themselves, as many already do, because they are
fighting the battle of their lives and for their lives. As yet it is not a
battle they will win, but they will have done their best and when they
can fight no more they will become MND angels. This swim is for many MND
warriors and MND angels and is raising money in their names. Please donate if you can.*
https://www.facebook.com/photo.php?v=684690268292079
