Recently Diagnosed

[MupstateNY]

Nikki, what is EL?

Thanks for explaining about the Nuedexa, I was wondering about that.

 

[Nikki J]

Emotional lability

 

[Tomswife]

NG. Sorry you are in the ALS boat. You will learn that everyone progresses differently. Keep a journal. And you may have good days and not so good days. Since you dont have much family support you may want to look into synapticure. They provide on line support. We are not with them, but we are thinking about it.
Tom PALS has bulbar onset. He is on Rizuloe, Nuedexta. And other otc and rx not related to ALS. He has been on Relyvrio. But we have to stop for an assessment due to severe diarrhea. He has been on relyvrio for 3.5 weeks.
When you work with your clinic you may need to anticipate needs. Don't expect them to be in charge. Some clinics are reactionary.
Some DME take a long time...like power wheelchair. 3 months for specs, insurance, review of costs, decisions, place order.
Your local ALSA may help assess your home to see if it is ready for ALS living.
Hugs to you.

 

[Mary2]

I am sorry if ALSA has not reached out to you as of yet. There are usually ALSA reps at the ALS clinics in Macon and Atlanta on clinic days. Not sure about Augusta.

 

[MupstateNY]

N Georgia, what is this about? "I'll try to join the next virtual meeting."

I only know about the I Am ALS weekly meeting, the Compassionate Care for women once a month, and my ALSA chapter meeting once a month (all virtual).

You can find out how to reach out to your chapter online -- tell the national website what state and it will give you a webpage.

Compassionate Care appears to cover all states.

Synapticure includes unlimited social worker support at no extra charge. Eventually I learned that they have a financial assistance program. I'm about to start up with them -- my local ALS Center is driving me nuts with their unresponsiveness and dropping the ball on submitting scripts and orders that we agreed on in clinic.

If your clinic has a savvy nutritionist, they will help you adjust things like calorie intake to fit with your body type and personal preferences. In the meantime, I'd encourage you to trust to your own experience with your body.

Note that as one loses muscle, the scale may give you a smaller number, even as you are finding your clothes getting tighter, because as you probably know, muscle tissue is dense (heavy).

 

[MupstateNY]

Tomswife, your suggestion of a journal is interesting. Can you say a little about the benefits? (When things slow down for you.)

 

[Tomswife]

The journal is for Tom. I keep notes about each day. Events. Changes in condition. Blood pressure. HR, OXY. weight. I interview him about once a week. Head to toe for symptoms, pain. Weakness. Emotions, etc.
Also notes on caregiver help.
Also DME notes.
Its a diary. What happened that day.
He is unable to write himself.

 

[gnat]

On the journalling, I write an update once a month (ideally would do it a bit more often). This is for friends and family and celebrates the good stuff in life and touches on the progression I am having. This has been awesome for me as it helps me really appreciate some things - I have reminisced over ski trips that I am very grateful I did before diagnosis, a funny story some shoes I can no longer wear reminded me of, how lucky I am to have supportive friends, and include photos of the cool stuff in my life. I found a 3 wheeler I can ride and have just done heaps of riding and had a lot of fun. The newsletter has been really fun for me to craft, and it makes the pleasures so much greater - I have them at the time, relive them when I write about them and then relive them later when I re-read my newsletter. It is a good way for me to connect in a less scary way with others - I can tell them stuff they are scared to ask me about and that I don't necessarily want to discuss face-to-face. It is also evident that there are plenty of fun things to talk about or do with me - even if I am becoming disabled. I even started a blog of my recent fabulous trip in New Zealand riding trails - www.nataliemnd.com . It's a really rubbish disease to have, but I want to live well while I can and I want to make the most of my connections. I found I enjoy writing, which is a bit of a surprise.

 

[MJT]

gnat-both your post and your screen name brought me joy!

 

[Mary2]

Gnat, What a great idea!

 

[Richter]

Kim. I was dx 11/7/22. Had Bulbar symptoms since 3/14/22. Just gave up my job because my speech is not clear enough and my job required that I speak to large groups of people. Would you tell me what an anti- inflammatory diet is?

 

[Richter]

NG. I’m in your club. Bulbar onset dx 11/7/22. First symptoms (docs thought it was dysfunctional larynx) started 3/14/22 with airway closure. You seem to be more positive then me and I admire you for that. Let’s both hang in there and do our best to sleep progression. I’m sorry you have this and. Wish you good luck

 

[KimT]

The first step in an anti-inflammatory diet is to give up all processed food and reduce sugar consumption. Focus on whole foods. I focus on grass-fed beef, wild oily fish, lots or organic vegetables, olive oil, avocados, berries and other fruit, pasture raised chicken and eggs. Depending on your body, grains may be inflammatory but you do need sufficient fiber. If I ate grains, I would eat organic oats. Nuts and legumes have lots of minerals and fiber. Even if you have trouble with food, a Vitamix can make most anything edible and if you have a feeding tube, you can still consume all the food that agrees with you if you thin it out after using the Vitamix. Just make sure you're getting enough protein and fat. Are you at an ideal weight?

If you need more help, you can send me a message and I'll give you my email address.

 

[KevinM]

I would also add that two blood tests, Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) are inflammatory markers that can help identify whether you have inflammation, either acute or chronic. I have mine checked regularly because I have a GI pathology that requires regular monitoring.

They don’t identify where the inflammation is, but they are a very good gauge as to whether you have existing inflammation or not. Those tests along with the regular CBC/CMP bloodwork can help point your physician in the right direction if the levels are elevated.