[Ginger]

Mary Kate Smith

Your not alone, I have the exact same issues.

[Ginger]

Hi Marianne Opilla,

I have Bullbar also, I had a feeding tube inserted in my stomach last year but did not start using it until April of this year. Since April I have lost my ability to eat solid food. I take my meals from a feeding tube. It helps me to maintain my weight with is most important for you and all ALS people. Another thing that has happened to me after losing my ability to eat is I drool a lot. so much so it was starting to choke me, we have solved that problem, with seasick patches but its have to be a certain kind of patch and you can only get this patch in the States. take care and hope to hear from you

Ginger

 

[Ginger]

My Biggest thing living with the Beast (ALS) is not being able to eat solid foods. Going to restaurants with my family and I can’t enjoy the food and it smells so good. I guess I could order something and lick it and then husband can take it home for himself. ha ha ha ha ha. just kidding but maybe it would work. mmmmmm, the smells but my husband and I have come up with a new way of feeding me. He’s my chef and he will announce I’m having  white broccoli and steak in my bag for feeding me tonight and then turns on the air frier so I can get the smell of the food. yummy just how I like it. medium raw steak and crunchy broccoli. I have a menu to pick from so I always get my favorite smells. Tonight it’s fish and chips, yes I do miss eating solid food.

[Ginger]

Hi Pepper,

I have very limited speech so I do use the speech assist app on my phone. I find it works great but when I’m home I use a whiteboard to communicate to my husband and friends that may come by. Texting using your phone is another way to communicate too. Hope this helps

Ginger A.K.A Spice Girl

[Ginger]

I have Progressive bulbar Palsy I.ve been taken this now for 2 years. I walk, Play golf and ride my bike with no pain now. Can’t talk or swallow very good, I have feeding tube if needed.
For a good night sleep i use 10mg THC and 40mg CBD
Hope this helps
Ginger from Ontario Canada

Neuropathy Support Supplement – Nerve Support with 600 mg Alpha Lipoic Acid Daily Dose
from Nuturna

[Ginger]

Hi all,

I was having burning sensations in both legs and feet.  I have found taking a natural medication called Neuropathy maximum strength has help tremendously. I take two pills in the morning and two pills at night. it’s all natural so no side effects. love it.  no more burning sensation and pain.

[Ginger]

Good Morning Kathy

I see your not getting enough protein and calories in your body. It’s very important you take in lots of protein and calories. What is happening to you is your pudding and mashed potatoes are not helping you. Its okay to eat them but most PALs don’t realize when you eat you are burning more calories eating your food than a normal person does. That is why you are loosening weight. What you should be doing is taking in more of the Boost I hope it has lots of protein in the boost. and eat the pudding or mash potatoes as a snack or evening dessert. you need to maybe talk to your doctor or a dietician,. Are you putting the boost through the feeding tube? If so you need to add two cal also at least two cans. that will give you more calories and it will help you. Are you taking any ALS medicine. Please talk to your Doctor. Do you have anyone from the ALS community coming to your home to help you. I would suggest getting a ALS sponsor to help you figure things out,  your going to need the help anyway so you should give them a call.  Take care and look me up on facebook.  If there is anything I can help you with let me know,

Ginger Monette

 

 

 

[Ginger]

one thing I did forget to tell you I was diagnosed 4 years ago and going strong. you can do this. I believe in you. tell what are you eating with the feeding tube?

 

Ginger

[Ginger]

Good Morning Kathy Stitz.

Yes it’s very difficult to be around your family and friends at restaurants, BBQ, special events anything that as food.  Do you live alone or are you married. I’m married and my husband takes very good care of me. What he does because he know how difficult it is for me to go to restaurants, so when he takes our puppies for walks he meets up with he good friend and will go to breakfast or lunch before he comes back home. This way I’m not required to go with him. Other ways of getting around restaurants and your out with friends in advance before you meet up talk with your friends and let them know how you feel about going to restaurants,  see if they could eat at a restaurant close to a Mall or shopping center and then ask if one of your friends would like to join you at the mall. You don’t have to necessarily  shop but a good walk in the mall would be nice. I like to people watch. So I just hang out in the mall while my husband or my friends have something to eat. At home, my husband will let me smell and taste the food with my finger. It does help. Loosing weight is a not a good thing. your not taken in enough calories or protein to maintain your weight and feed the beast (ALS) My husband maintains my weight at 136, Breakfast: Two  cans of TwoCal HN and one bottle of Ensure Protein Max. half a bottle of water, for dinner he does two bottles of Ensure Protein Max half a bottle of water. I weight myself everyday to make sure I’m not loosing weight. You must and I mean must keep your weight up. I get about 2200 calories everyday. but I’m an active person, I play golf twice a week, my husband loves karaoke so we do that on Saturday nights and I dance a lot while he is singing. I walk with him with our puppies, I’m hoping to start riding my bicycle again, we do plan small trips on our bicycle with a couple of our friends. You have to stay busy, don’t let the beast take over your body. you must stay strong and positive that is important. also, I forgot to tell you, do you have a cell phone if you do download the speech assist app, it’s awesome and you don’t need pin and paper, get the boogle board you can order it off Amazon. I keep the boogle board with my incase my phone dies and I have no way of recharging it. I hope this helps keep your weight up and stay positive. Keep positive and if you would like to keep in touch with me my facebook is gingermonette If my husband and I come of with some new technic to make my life easier I will let you know. Take care and kill the Beast (ALS)

 

Ginger

[Ginger]

I do the Scopolamine patches. they are a big help with the saliva

[Ginger]

Hi Kathy,

I know it’s had but you have to stay positive. I don’t think about it. I was diagnosed with Progressive Bulbar Palsy/ALS. in October 2020 but hard started loosing my speech a year before my diagnosed. I continue to live one day at a time. each day is different, but I make sure I have fun. I golf, walk my dogs, ride my bicycle and exercise everyday. My doctor requested that I have a peg tube put in my stomach while I was healthy so I did and it’s great. Try to stay active, let your friends help you and let them know how your feeling. Friends can be a big help.  I can say this because I have a great community of family and friends that look out after me. I can say I’m blessed.

Ginger, Loving life.