Recently Diagnosed

[North Georgia]

Hello Friends,

Thank you for

I was Dxd with Bulbar ALS on November 14th, 2022. First symptoms I recall were
probably back in May.

I'm still able to eat, speech is in and out, and walking some, etc for exercise, but it is coming on.
Lost a lot of weight but weight has stabilized somewhat I think. Heavy salivation.

I'm on Riluzole from first neuro and a lot of supplements ( just started NAD+, Theracumin, TUDCA, etc). Am on low dose opiods to control pain and keep calm. Would like to hear of any supplements, diet, etc that helps anyone. Hope to get on AMX0035 and Radicava soon.

I have my first appointment with the big clinic in Atlanta this week. I am going to push for feeding tube (any advice ? ), the two drugs, etc.

I live alone with no family support close by (problem). Have one daughter on the spectrum who lives with my ex.

Am going to fight it as best I can - would like to see my daughter as long as possible.

Any advice / support is MOST welcome.

Thank you,

NG

 

[Nikki J]

I would definitely add nuedexta to your list of wants. It is for the emotional lability that often accompaniesALS but there is some evidence it can help for bulbar signs especially swallow for a few months. It is often a PA looking for EL but EL is really determined by history rather than something verified by exam. Ifyou look at the nuedexta website there is a questionnaire that you can print out for your doctor.

otherwise it sounds like you have a good plan do look at our resources section for the second opinion sticky.

there are certainly other PALS who live alone. It can be done. The clinic may have a social worker and in Georgia I think your ALSA chapter is pretty decent. I would get involved with both

sorry to meet you but welcome

 

[MupstateNY]

Hi NG, I'm in your cohort, dx came 11/16.

You're ahead of me as regards supplements -- I don't know anything about them yet.

Have you thought about message and/or voice banking?

I've seen some people who live alone with an extra room arrange for a student to live in the house with a rent discount or no rent, in exchange for some care.

I recently applied for food stamps, help with the cost of heating and AC, and Medicaid's "long term care" program. I guess this will result in me getting a medical alert system and some hours of help with housework, bathing and dressing. I believe that later on the array of services can expand somewhat.

People here at the forum have been incredibly giving of their time and experience.

 

[affected]

Welcome and thanks for the introduction so we can walk well with you.
Getting the feeding tube early could be very important for you as you can put the meals in yourself and make sure you get lots of calories and stay hydrated. Preventing weight loss can really help not speed progression and calories and hydration will increase your QOL. This will make your time with your daughter the best you can have.

Keep asking questions too!

 

[Mary2]

The GA ALSA has in person and virtual group meetings. My PALS and I have attended the virtual meetings and enjoyed these. GA ALSA also has some limited grant money up to 1k per award every 6 months that can be used for care or medical supplies ect. The information about this is on their website.

I would take to heart what Nikki says about looking at the nuedexta website for the questionnaire that is relevant to the NP or doctor prescribing Neudexta. Others here have benefited from the Neudexta. My Pals was limb onset and the drug is only being considered for him now. I feel he could have been placed on the drug sooner.

When we started with the tube feedings my husband gained back too much weight. First he and I disagreed about how many calories he needed each day. But also I felt the dietician was reading off the Kate Farms food instruction label and not considering that my husband was 76 at the time. We were meeting by zoom because of the Covid and this probably is partly why that happened. So I guess what I am saying is don't just blindly do what the dietician says, know your body and your metabolism.

 

[KimT]

Hi. I lived alone for the first year, then moved and got a housemate. I don't have a caregiver and will no doubt have to pay out of pocket or go to a nursing home as the progression gets worse.

I am limb onset and so far no bulbar involvement. Before I was diagnosed I was in a doctorate of naturopathic health program which I intended to use as my second career so I was able to develop a vitamin regimen that worked for me. The first thing I did was got blood work to measure all my vitamin, mineral, and amino acid levels. Then I got a microbiome test to see if anything bad showed up there.
There were some deficiencies I corrected and, after that, I started adding supplements one at a time to see if I tolerated them.

I focus on an anti-inflammatory diet (most of the time) and target my supplements and nutrients to help keep inflammation low, feed the good bacteria in my gut, and increase what I believe are helpful blood levels of various things.

Not everyone will agree with my method but it works for me.

What didn't work for me was Mayo Clinic's dietitian. She wanted me to gain 30 pounds by eating cake and ice cream. I was a competitive athlete and runner but I listened and felt like crap. I ended up allowing my body to lose 10 of the 30 pounds and felt much better. Then I went back to healthy eating. I just panicked when I was first diagnosed and, living alone working as a CPA and college professor, just did what the dietitian said. Once I went on disability, I was able to focus on my body and what it actually needed.

Everyone is different. I wouldn't recommend any particular regimen unless I saw the blood work. For example, I would never recommend supplemental iron but I need it because my iron stores are below normal unless I take it.

Best wishes. You'll find a lot of support here.

 

[North Georgia]

Nikki,

Good advice on neudexta and social worker, etc. I signed up for local chapter bout 3 weeks ago - have not heard back from their case manager yet.

Thank you !

 

[North Georgia]

Hi Mupstate, yes, -- I was Dxd on 11/14. Good ideas on roommate and voice banking. Acepela software looks good - I just need to get on it. Seems like a roommate could work but we'd have to be really careful in finding the right one ?

Sounds like you're well organized on getting assistance - you are way ahead of me on that front.

Agree about the wonderful people on the forum

Thank you my friend

 

[North Georgia]

Affected,

Good advice on the feeding tube & importance of keeping the calories up. I had a dysphagia onset and lost 40 pounds in two months. I'm eating a lot more - weight has stabilized somewhat I think. Although just started TUDCA and have had diarrhea over the last couple of days. Thank you so much for your kind words

 

[Nikki J]

Are you titratong tudca up or did you start at full dose? My clinic recommended increasing by 250 weekly in pre relyvrio times I had to go even slower

 

[North Georgia]

Mary, thank you for the info on the GA association and nuedexta. I'm def going to request it and also ask for options on this heavy saliva
problem. I'll try to join the next virtual meeting.

Best to you and your PALs

 

[North Georgia]

KimT,

I agree with your overall approach. I'm a bit surprised at the Mayo clinic's dietician's advice. Seems like there are two schools of thought on sugar. I don't tolerate a lot of sugar but seems like some clinics recommend it. I was a college athlete and runner also. I'm trying a lot of supplements now.


Glad to be on the forum

Thank you

 

[North Georgia]

Nikki,

I think I started too high on TUDRA - about 1,000 mg per day. I'm backing off to 500 mg per day.

Thank you

 

[blakej]

Hey NG.

Sorry about your diagnosis but glad to hear you want to fight this! I was diagnosed with bulbar ALS in September of 21. I am doing pretty well with my progression. Like you, I am receiving NAD+ 3 x Week. Theracumin as well. I have also been talking ALCAR 1000mg 3xdaily. Some good research with that supplement. I have done heavy metal chelation with some success. I sauna 2-3 times a week, EWOT (exercise with oxygen), Wim Hoff breathing exercises, and spend a couple hours in sun most days. Warmer climate will be easier on the muscle stiffness and cramping.

Best of luck to you!

Blake

 

[lgelb]

Just a note that there is no evidence that heavy metal chelation will help ALS, though if you have toxic levels, you would want to address those for overall health.

I would question EWOT, which entails upping oxygen levels when we know that the inability to expel CO2, a byproduct of oxygen levels, is a problem in ALS. It is attached to a lot of sleazy "science" [sic] and treatments that are likely only to lighten your wallet at best and possibly overload your lungs/speed progression. Beware of anything around ozone, IVs, electric field machines, etc.

I will note, however, that the ALCAR regimen mentioned has been signed off in terms of safety by ALS Untangled.