BethU, PEG news?

Status
Not open for further replies.
Beth, I wish you the very best with the feeding tube. I hope it helps your days go a bit more smoothly. I will be thinking of you, and as said in an earlier post, don't just go away without telling us. I understand once you join this forum, you are obligated to remain and tell everyone everything that happens to you. :) Good luck and good thoughts are being sent your way.
Nancy
 
BethU,
Hope the feeding tube goes well for you. My mom is getting to the point where she cannot eat anything except a popsicle. Does there come a point where people with ALS cannot swallow at all? You are still able to drink your malts? My mom uses these plastic lab bottles to drink her water and juice, they have a plastic tube on the cap so she can sort of drizzle the liquids in her mouth at a much more managable rate just by giving it a squeeze. The down side is that they sometimes dribble out of the nozzle and you just have to unscrew the cap to stop it. Good luck with your surgery.
TFisher
 
TFisher ... I suspect that there may come a time when your swallow muscles don't work, but I have only experienced that once. It was very strange and a little scary, but I found that turning my head from side to side got the muscles working again.

I can drink my shakes, but not as much volume as before. The first small glass goes down OK, then the second I start having problems with reguritation and excess saliva. Then everything I put in my mouth starts coming out my nose, and it's just too disgusting to go on.

It sounds like your mother is ready for a tube. So far (knock wood) except for squirting Ensure all over the place at one point, the feedings have gone well. It is WONDERFUL for hydration. I have been so thirsty for a couple months, it's really a relief to just get water down! Tell your mom there are strangers praying for her. I am!

Bluebottle ... did you check with your doctor? Hope it's solved.

Rose, Crystal, Brenda, Kim, Kelly, Nancy et al ... love you guys.
 
BethU - My mom had the tube placed in December. I'm just wondering if everyone has to get a trach.
Tfisher
 
BethU,

Best of luck to you and God Bless you and your family.

Your attitude is an inspiration.
 
BethU

I'm glad to hear that the tube is going well. In a week or so, I have an appointment with a Gastro Dr. and I expect that I will be getting a PEG soon thereafter.

I have been losing so much weight that I am really hoping that the tube will increase my energy level. And the hydration concerns me,also. It hasn't been much of a problem yet, but in a few months, it will be 115F in Phoenix, and there is no way that I can drink the amount of water that I will need, then.

Keep us up to date on how it is going. It is very helpful to me to hear the benefits of the tube.

John
 
John,

I think the tube will help you a lot. My mom was getting to the point were she needed help to get up and she had a lot of falls. I think she was dehydrated on top of not getting enough calories. There has been a big improvement since she has had hers placed.

Good luck!

Tfisher
 
Update

BethU

I have spoken to the doctor and I have medication to assist stomach emptying as I am holding onto my food high up and due to the low level of activity and not eating solid food the bowel has become lazy. The backup of food resulted in pressure under the diaphragm and therefore pain in the ribs. I was generating alot of gas with slow moving digestion and so that didnt help either. Seem to be doing alot better now - Thank you.
 
lability issues again

Bluebottle ... I'm glad they have figured out the problem. Hopefully, this will be taken care of now. I'm going really slow on the feedings ... tried to take in more than I usually do, and I paid for it with lots of gas pains. My theory is to work with your body as much as possible and listen to what it's telling you.

Speaking of listening to what your body is telling you: Had my next-to-last clinical trial visit Friday, and tried to convince them that the open label meds are not affecting my lability problems.

And apparently I did.

The previous trial meds had SUCH a good benefit, in energy and mental focus, along with controlling (eliminating!) excess emotional displays, The current trial meds are doing very little.

So I had a meltdown in the exam room Friday when the doctor in charge (not Dr. Graves, a resident, I think) was telling me how good I have it, and why I shouldn't want to take a med that actually works. I'm in the open label phase, so they know what I'm getting now.

She said it would be at least a year before they could definitly tell me what dosage worked so well. And I lost it. I don't have *a year* to play around with paperwork games. You tell me it will be a few weeks, or even months before I can get it, OK, but when you start talking years to wait for me to get a proven med I wonder what planet this doctor got her degree at. What part of ALS is it that she doesn't understand?

So, as she kept patting me on the head and saying how lucky I am because I can still walk, and murmuring while I was sobbing, "I understand" I started screaming at her "You don't freaking understand. Stop saying that and listen to me." (Of course, she couldn't understand my speech, either, let alone my meaning.)

Anyway, I'm afraid I lunged at her screaming and I'm afraid scared her a bit. Or even a few bits. She edged over to the door and opened it saying "We need some fresh air, it's really stuffy here" and went running to get Rebecca, the woman in charge of the trial. When Rebecca saw me sobbing and scream she was really shock up, poor thing, and was shaking for about the next hour.

Anyway, the episode lasted 40 minutes. (I timed this one, since there was a big ol clock on the wall.) In the midst of my wailing, I started screaming at Juliana another four times, with J opening the door and looking like she was ready to bolt each time.

After the first lunge at her, I was able to start typing again and told Rebecca via light/writer (Rebecca's one of the sweetest people on the planet and I'm sorry she had to see this) ... "Don't worry about this. It's just the lability. I'm fine." Of course, I was still sobbing and screaming at the time.

Anyway, it ended, and I continued my attempts to communicate: "The lability meds are not working." And Rebecca said, "Uh, yes, I can see that." She is the one who translates my trial diary. She said, "When you put down emotional meltdown, this is what you're going through?" I said, "You got it." And she said, "Holy ..." (I translate loosely)

So, in my own little way, I continue to spread awareness of ALS symptoms. :twisted:

They paged Dr. G. out of a meeting, and I continued my campaign with him to get lability meds that work as well as the first trial meds did. It may take another month till this trial ends, but they want me to continue to the end. (It's probably a question of getting paid by the Zenvia manufacturer ... I'm sure if I drop out, UCLA won't get paid, and financial considerations are OK with me. Everybody's got to make a living, and as a PALS, it is very much in my interest to help ALS clinics survive.)

On another note ... when my home-visit RN arrived a couple days ago and was filling out her paperwork, she asked, "Do you have a fever?" It is a blessing that my higher power took away my speech first ... I guess she hasn't figured out how thermometers work. She probably missed that day in nursing school. :razz:

Onwards and upwards ...
 
BethU

I love reading your posts - especially this last one. You are so articulate and entertaining I seriously hope you are writing a book about your ALS experiences. You have the power to educate and make people sit up and take notice. The entire ALS community would benefit greatly from your insights.
Keep writing - you're amazing. And keep fighting - you're an inspiration.

Deb
 
Wow, Deb. Thank you for those kind words. :oops:

I have a blog going, but I don't bandy it around too much, because for every day that we are able to laugh about this rotten disease, someone else is having the worst day of their life trying to care for a loved one, or seeing their own bodies decline.

Don't know if it's within the rules, but my blog's at http://mnddiary.blogspot.com

Be warned ... it's got "bad attitude" all over it.
 
Oh Beth, I almost don't know what to say to you about the frustration you must be dealing with when trying to communicate to your health care professionals--not only in the hospital during your peg procedure, and now this latest with your clinical study people. But I do want you to know how valuable your writings are in sharing your experiences for all of us. I want to be as informed as possible about ALS, and because we all progress in different ways (the snowflake analogy, as you once told me), it helps me immensely to learn about what's ahead for me, and to know that I'm not alone. And if it takes "screaming" to do it, keep it up. We can all learn from each other. God bless you.

One little comment from me when I signed up for new insurance after going on Medicare. The insurance company was taking a survey on my general health, and asked "other than ALS, how would you rate your overall health, excellent, good, fair or poor?" Yeesh, what do you think I said: how am I suppose to separate ALS from my overall health picture, which limb do I cut off? How dense can people get.:smile:
 
Beth,

I love the blog, didn't get to read the whole thing but I will.
YOUR ARTWORK IS GREAT!
 
Beth, you have been holding out on us! I knew you were amazing but....wow. Gotta go finish reading the rest of the blog-

Lydia
 
Hi Beth,

Nice name by the way, it's the same as my wife's but I won't hold it against you, I promise. I just went to your blog and what I've read so far is great. I loved the wig story and I can certainly relate to the phone conversation in "Putting the hell in health care". Thanks for all of your work, I have to keep laughing because the alternative is no fun.

Barry
 
Status
Not open for further replies.
Back
Top