Raise the head end of the bed with blocks?
Randy, I use a foam wedge that is about two feet long and raises my head about twelve inches. I still use a pillow, but the pressure is no longer on the neck. Cam mentioned raising the headboard side of the bed by placing blocks underneath the legs. That also sounds like it would work.
Are any of you KD men having trouble coughing? Bob sounds so weak as he coughs, like a dainty woman. I know he can't help it, is there an exercise to try to strengthen the diaphram?
God is the greatest physician of all.
Lolo, my neurologist as well as my physical therapist gave me lung exercises and they seem to help. Exercising every day while breathing deeply probably helps the most.
Here are three quick exercises to have Bob try.
1) Sniff: While sitting upright (straight back) breathe through the nose and exhale through the mouth. Take a long and strong sniff. Focus on the sniff and breathe into the stomach (diaphragm) so that you can feel your abdomen expand. Expel all of the air using your diaphragm muscle to empty your lungs. Practice this exercise at least once a day for about five minutes. I recommend early in the day because your muscles and mind need the oxygen.
2) Cough: Use the sniff above to fill your lungs and then cough hard trying to expel everything from your lungs at once. Practice this three times a day for about two minutes each time. This is a great exercise that will help you bring up phlegm if you get a cold or pneumonia. It is also helpful in clearing out your throat should food becomes stuck.
3) Exercise: If Bob is not already exercising, get him on some light aerobic program. It can initially be as simple as stretching and bending, lifting the arms and legs, etc. With each repetition, focus initially on the breathing (deep breaths and exhalations) until it becomes natural (comfortable). Then Bob can focus more on the exercises. Each day, preferable at the beginning of the day, exercise ... use the sniff and cough as a part of the exercise program. The length of the program isn't as important in the beginning as the actual act of exercising. Well oxygenated blood flows into the brain and the muscles and the endorphins begin to flow through the entire body. What a great way to start each day.
Frequency is much more important than longevity initially. The routine is what is important.
Also, have Bob discuss the issue with his doctor. He might recommend a PT or specialist to help improve lung capacity or determine that something else is causing the problem.
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This is really informative information Bruce. it is necessary to lookover these concerns also.This message has been edited. Last edited by: Bruce,
Thank you Bruce! Got the email from the blog too.
Bob is VERY active, he pushes himself everyday and probably too much. He on occasion has to remain in bed for a hr or so as he just can't get going at all. Most days he is up and outside by 6am working around the yard.
Not sure how much everyone else moves but he feels it is keeping him from a permanent wheelchair right now. It is so hard as a spouse to feel helpless as you see things change.
Recently it seems like my husband is having a harder and harder time chewing. He loves a good steak but can't enjoy eating one anymore due to just trying to chew the meat. Even a hamburger is becoming too much, his jaws are just too tired and he wants to give up.
I tell him we are in no rush, just keep chewing and eating, don't give up! He pulls the lettuce and tomato off the sandwich and seems to be able to eat better. He's lost weight and I'm afraid if he gets ill and ends up in the hospital he just won't have enough weight in him to carry himself through any illness.
Is anyone doing anything to exercise their jaws? Chewing gum for instance, would that help? I keep saying we should return to the MDA clinic since it's been a few years but he hasn't given me the yes to make an appointment.
It pains me to see my once healthy husband who could down plates of food now floundering on a hamburger. Any suggestions??
Lolo, the situation you addressed is one that many of us experience as KD progresses. I know of several men who couldn't get enough calories because of this issue.
The process we are talking about involves three muscles: the jaw, tongue and throat. They are all integral to the food intake process. I would recommend the following:
First, there is a good manual offered by the ALS Association on Swallowing and Choking. You can read more about the manual including the Table of Contents at my Living with KD Blog. A couple of chapters deal with how to prepare food and the types of food to help maintain weight.
Second, As you mentioned, make an appointment at the MDA Clinic to address this issue. Or, contact your husband's neurologist concerning seeing a physical therapist. There are exercises that are helpful.
Third, try different types of exercises to see what works. I practice several jaw and swallowing exercises every day. I don't know if they help, but they don't hurt. There are some exercises listed on the KDA website that might help. Also, my blog has some comments/suggestions on the subject. Jaws-Not the Movie
I hope others who read your post will have some ideas also. If your husband finds some exercises that seem to help, please post them so others can try them also.
The KD group in Japan just published a study on exercises that they found can improve swallowing in KD patients. The paper can be found here. These exercises are quite straightforward and can be done anywhere one can lie down. A pdf of the exercises can be found here. The exercises are done 3 times a day, every day.
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