[Walter]

Thank you Giselle. I asked my doctor on my visit last week if he thought I might have Lyme disease, and he said no he didn’t think it was Lyme disease. He said Lyme disease didn’t affect the nervous system, but I thought I read that it did.  Maybe I should have insisted on being tested anyway. It would not have hurt to be tested to be sure I don’t have Lyme disease.

[Walter]

Thank you Walter. It is good to know that it is beneficial. I will continue to use it then.

[Walter]

I bought some pure blackberry juice a month or so ago. I didn’t think it would do any harm.  I don’t take it everyday. I noticed it seemed to help with bowel movements when I was slightly constipated so I take about half a cup every so often then. I have a feeding tube. When I first added it to my feeding tube it formed a gel like substance when it mixed with my feeding tube formula food and clogged my tube. Since then I put it in after I flush the tube with water and it goes in the tube without a problem. Do you think this is something that doctors might recommend we take?

[Walter]

The doctors advised me that I should not attempt to swallow food or liquid by mouth anymore because of the risk of choking and aspiration pneumonia. They did a swallow test at the hospital in March when I had surgery to place the peg feeding tube in my stomach, and they said just about everything I swallowed was going into my airway and into my lungs.

[Walter]

I have to rely on my peg feeding  tube completely now for all my nutrition since I am unable to swallow food or water without choking or aspiration. Not only the swallowing process is a problem, but my mouth and tongue do not work very well. I have very little control of my mouth or lips. If I try to place food or water in my mouth it comes right back out all over my clothes and the floor or furniture. I have a problem with constant drooling of saliva from my mouth all over my clothes and the floor. I have no control over my saliva.

[Walter]

Thank you for the information Elizabeth. I definitely need to look into getting a cough assist machine and suction device. They sound like they would be very helpful in the control of my mucus and breathing problems.

[Walter]

Thank you Walter for the information. No, I don’t have a cough assist machine. I have heard of Mucinex, but have not tried it. I will try to add more water to my feeding tube. I add some water before and after each feeding to flush the feeding tube. Thank you.

[Walter]

Thank you Elizabeth. I live in West Central Illinois near Quincy.

[Walter]

Thank you Dagmar. I will check into the link you provided.

[Walter]

Hello: My diagnosis has not been confirmed yet, but my neurologist said he was sure I have ALS. I need one more test called the Nerve Test to confirm it. My symptoms started about 2 years ago with difficulty swallowing and slurred speech. I delayed going to a doctor thinking it was acid reflux possibly and would get better. I also had gradual weakness in my legs and loss of weight. I pureed my food for a long time and did okay for awhile, but about 6 months ago I had trouble even swallowing pureed food without choking and aspiration and totally lost the ability to speak in a way that anyone could understand. I had to write everything down to communicate. In March of this year I had surgery to put a peg feeding tube in my stomach. In 2 years I lost 60 pounds. I went from a weight of 170 down 110 pounds. Since insertion of the peg tube I have gained a few pounds to 113, but I am still very weak especially in my legs and arms and have developed breathing problems due to a lot of mucus in my lungs and throat and inabilty to cough it up very well. I am unmarried and live alone. I continue to live in my rural home and be independent for now, but not sure how long. I recently got a rollator walker which helps me get around much better.