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KatB

Active member
Joined
Mar 3, 2015
Messages
61
Reason
PALS
Diagnosis
02/2015
Country
US
State
FL
City
Oxford
I've been learning from you all since March 2015. It's time I got involved! Just call me Kat...

In April I attended my first local support group meeting and found it very informative. One of the next things I intend to do is get established at the local ALS Clinic in Tampa, Fl. I have been a Licensed Medical Massage Therapist since 2000 and I love being in service. Unfortunately being unable to communicate with clients required me to close my practice of 16 years. :cry:

Dec. 2014 was my first symptoms of slurring. Today I use an iPad mini with an AAC Flip Writer app to speak. I am still mobile but I have been experiencing weakness in my legs, over reactive reflexes in my legs & facilitation (twitching) in my back muscles at my spine. I have been labeled with PBA in February this year.

I also follow alternative medicine instead of traditional medicine, use organic formula with my feeding tube called "Liquid Hope" and still eat soups and blenderized foods by mouth. Ok, that's my intro.....

It's so nice to meet you all!
 
I would call the clinic asap. The wait list is often 2-4 months. Nice to meet you. So sorry you are joining us.
 
Oops, my symptoms started Dec 2013 not 2014.
 
Hello Kat, welcome to this very informative, supportive forum.
God bless, Janelle x
 
Good morning,
I have contacted the Tampa clinic & yes it is a five month wait. They called me the two days later to see if I could come in the following day, but I had a conflict & couldn't make that time. Fortunately I'm doing well, I can see the cheaper director next week (@our support group meeting) to help me create a plan For future needs. I have to praise the Traditional Chinese Medicine Dr. In Oct 2014 he said I would be dead with in one year if I didn't stop working and take care of myself. I am so much better now than I was this time last year. I am so grateful for him & this disease, appreciating what I have in my life today.

Loving life, KatB
B-)
 
Hey Kat-My symptoms sound very similar to yours--I have just recently lost my ability to speak and I am now feeling the twitching in my right arm and my right leg. I have been a teacher for many years, and not be able to work is hard for me--but I realize the importance of taking care of myself--especially for my daughter who just turned 17.

My doctor is really encouraging me to have a feeding tube--however, I have said no, because I do not want it to restrict me for any daily activities that I can still do at this time. Have you had any problems with still being "active" and your tube?

Christie
 
You can pretty much do everything with a tube. Some people have been restricted from swimming but after healing many have been allowed in a clean water supply ( not that you would care to swim in dirty or bacteria filled waters)
Get the tube you will be able to do more if you are wellnourished
 
A peg won't restrict you. I got mine about a month ago.
Swimming is only an issue while it's healing.

Get it while it's still a simple operation. Don't wait until you're starving.
 
Christie, I am so glad I got the tube when I did. I should have gotten it a few week earlier but the doctors schedule held me up. My reasoning is I've lost 35 pounds in 5 months. The swallowing restrictions kept me from consuming enough food to maintain or slow the weight loss. Yes, I was a bit sore after but within 4 days It was much better. The home health nurse brought me some Transparent Film Dressings (Frame Delivery). The 4x4 3/4" (try to get a bit larger size) iwas a bit hard to covering all but it worked. I was able to swim in 3 weeks with it covered. (We have our own salt water pool so I don't worry about bacteria) . I'm still very active, shopping, some gardening, home chores and I don't have any restrictions from the tube. In fact it makes it much easier to stay hydrated and adding formula with vitamins/meds no more fighting pills or masking them in foods and forcing them down because of the taste. Please don't wait. My wonderful daughter got me several soft tank tops, they hold the feeding tube close to my body I feel comfortable and no fear of it falling out in public (like it did in Walmart) LOL At the support group meeting several members were not sure if they wanted to do one. They asked to see mine and it really eased their fears. Piece of cake!
 
Thank you all for making me feel comfortable and a valuable asset to the group.
Kat
 
yes, I too say thank you for the info regarding the tube. You have all given me much information to consider!

Christie
 
Christie, the same night I posted I thought, what other ways can a feeding tube be an inconvenience?
Not just look, the discomfort, at this point nothing about ALS is convenient, I didn't know about the pump before I got mine, had never seen one, didn't know anyone who had one. It sounded very complicated, but it's quite simple.

The pump can be used many ways, like traveling, mine has a back pack for folks that are mobile. It holds the pump, hook it up everything is in the backpack and you are being fed while taking a walk, depending on the speed the pump is set on it can take up to 3 hours, you can do it watching TV. You can warm the formula, thin it down and use a syringe to push it through the feeding tube, which takes about 5 minutes to push 16 ounces or u can use the syringe without the plunger and that's gravity fed, can take 15 minutes for 16 ounces. Like I said piece of cake. If you would like pictures let me know, I'd be happy to provide.
 
I have not heard of this-yes, I would like to see a picture-do you need my personal email for this?
 
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