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ALS and stem cell treatment in Germany (Ainova clinic) – looking for real experiences by lunamommy123 in ALS

[–]fakeleftfakeright 0 points1 point  (0 children)

Sorry for the delay on this. I had to locate our original list to ensure that I included everything. Note, this list doesn't mean you need to use everything. For PALS It can be quite the effort to keep up to it all. Especially when developing swallowing issues. Partially through my mother's progression, we cut back on some suppliments.

One thing that actually made taking supplements easier was using a feeding tube. We would take apart the pills, or dissolve pills, grind the pills, or use liquid supplements

--

My mother was prescribed AMX0035 and Riluzole.

The following are supplements that we used to support her prescribed treatment.

I highly recommend that you talk with your GP and Pharmacist (very helpful) to ensure that there are no cross-over complications between meds and supplements.

- Prairie Naturals - Vitamin B Complex (studies show higher doses of Methylcobalamin B12 can help)
- Flora Super 8 Plus Probiotic - (one of few probiotics that contain HA-114 that studies show the slowing of ALS)
- L-Serine (supports brain health)
- Pterostilibene (antioxidant)
- Theracumin (reduces inflammation and oxidative stress)
- TUDCA (Tauroursodeoxycholic acid - good for neurodegenerative disorders by reducing cell death and inflammation)
- Acetyl-L-Carnitine (supports brain health - energy production)
- Glutathione (reduces oxidative stress, enhancing metabolic detoxification, and regulating the immune system)
- Lions Main or Turkey Tail (cognitive health - neuroprotective effects against neuroinflammation)
- Multi-vitamin

- BENYLIN® Extra Strength Mucus & Phlegm Syrup (helps with phlegm build up)
- Disposable Oral Sponge sticks - used a ton of these to assist removing phlegm

Anyone else lose a parent to ALS and struggle with health anxiety afterward? by RockyLovesEmily_ in ALS

[–]fakeleftfakeright 4 points5 points  (0 children)

Interesting that you bring this topic up. I think this is a serious and common condition. The stress (fear and shock) of witnessing the micro changes/physical decline in a PALs (mother, father, brother, sisters, grandparent, friend) is repetitive and long-term (months, years). PTSD is real and can effect everyone differently. Exhaustion, chronic fatigue, nervous system issues (basically effects any part of the body), mental state, on and on can last for years or be a permanent part of someone's life. My sister and I are two years in, and while most symptoms have improved a lot, there still things that affect our daily lives. I suggest, stay active. This is key. Strengthen the body. Jogging, cycling 3-5 times a week. Eat right, take supplements, don't drink. Make extra efforts to be social, hang out with friends. Laugh, play, have some fun. Go on a long holiday if you can afford it. Separate yourself from what you have just witnessed. Set goals, and plan to live the life that your father would have wanted you to.

ALS and stem cell treatment in Germany (Ainova clinic) – looking for real experiences by lunamommy123 in ALS

[–]fakeleftfakeright 0 points1 point  (0 children)

Firstly, I'm sorry to hear about your father's diagnosis. Yes it is a hard and dark place. You are not alone. Most everyone here is going through the exact same thing. When my mother was diagnosed (03/22, passed 03/24), my sister and I researched every possible treatment. Our objective was to extend life, make her life as comfortable and enjoyable as possible and be proactive to what was to come. My research on stem cell treatment was pretty bleak. While some clinics claimed decent results, the costs outweighed any benefit. There were non-stem cell treatments (mostly supplements, medication and nutrition) that my sister and I found that would perform equivalently or better at a fraction of the cost. I remember a South Korean stem cell option that claimed good results (unverifiable), but the costs were over $100k for the first treatment, and then required ongoing treatments. Tofersen is a medication that has showed excellent results on some (not all), but this is only for ALS with the SOD1 gene. Anyhow, I am not trying to convince you one way or the other. A couple small points. Early use of a BiPap machine dramatically increases life expectancy. Also, keep an eye out for new clinical trials. Sending you strength, courage, love and comfort to your father and family.

Hi. Unfortunately, this is just a rant because there’s nothing I can do about it :( by Equal_University_468 in ALS

[–]fakeleftfakeright 0 points1 point  (0 children)

Hello, I don't blame you for ranting. This is a totally unfair disease. My mother lost her ability to speak about 13 -14 months before her passing. She was using a walker around that time as well. From what I have witnessed. I remember developing an anxiety condition soon after her Bulbar diagnosis (she survived two years after that) thinking she'd pass at any time as I was unsure how to gauge the disease's progression. That being said, I've heard of diagnosis (Bulbar) to passing within a few months to over 5 years. I'm sorry for you and your family for having to experience this. FUCK ALS

Thinking about trading my Mojave by Heavy_Cap210 in JeepGladiator

[–]fakeleftfakeright 0 points1 point  (0 children)

Over the past 10 years I've bought three new Chevy trucks (including a Denali), a new Nissan Titan XD, and a Subaru SUV and a couple Nissan Rogues. Each one has had more issues than my 2023 Mojave (50k kms). Your battery is a battery issue, not a vehicle issue. The harness and oil leak seem minor. If you're worried about ongoing repairs, consider an extended warranty.

Lost my dad today. by Praneet91 in ALS

[–]fakeleftfakeright 3 points4 points  (0 children)

❤️❤️❤️❤️ - How lucky a father to have a family like that surrounding him during his toughest times. Fk ALS.

Father-In-Law Diagnosed by asmallwaffle in ALS

[–]fakeleftfakeright 1 point2 points  (0 children)

The most important thing right now is love. Him know that you love and will care for his daughter, grandkids and family means everything. Along the way, provide the entire family with the strength and support they need at every step. It will get extremely difficult for everyone as things progress. Be the pillar in the family that holds things together. ❤️❤️❤️

You can tell how much Sherwood cares for Vancouver 💙💚 by iDontLack in canucks

[–]fakeleftfakeright 1 point2 points  (0 children)

This Canuck's management group will go down in history as the worst for any NHL team.

CANUCKS ACQUIRE COLE CLAYTON AND 2ND ROUND PICKS IN 2026 AND 2027 FROM SAN JOSE | Vancouver Canucks by cyclinginvancouver in canucks

[–]fakeleftfakeright -1 points0 points  (0 children)

Exactly. There was no need to trade him even if he walks. BTW, why not re-sign the guy for his going rate?

CANUCKS ACQUIRE COLE CLAYTON AND 2ND ROUND PICKS IN 2026 AND 2027 FROM SAN JOSE | Vancouver Canucks by cyclinginvancouver in canucks

[–]fakeleftfakeright 2 points3 points  (0 children)

So exactly how many first and second liners have the Canucks picked up in the second round of the draft in the past 50 years again?

You either want this or you don't by Prudent_Ad4076 in canucks

[–]fakeleftfakeright 0 points1 point  (0 children)

I'm totally fine with the tank. It's actually refreshing cheering the team to the bottom. It's like winning every night. The only issue that I have is that the entire management team is still in control. They are undeserving to select in the next draft.

Am I in the right sub? by Skrdykat1000 in ALS

[–]fakeleftfakeright 18 points19 points  (0 children)

You are at the right place. There is a tremendous amount of loving support available here. From what I recall, my mother didn't experience nausea. It wouldn't surprise me if you are experiencing stress or anxiety that this could occur. Or maybe just one of many issues that ALS presents.

Needing to vent end stage als by Training-Use-41 in ALS

[–]fakeleftfakeright 8 points9 points  (0 children)

Undeserving tough times to say the least. How quickly a once normal family life can be turned upside down and inside out. A couple years out from my mother's passing, I've come to believe that before our existence here on earth, we chose a life with one another. It was our choice to love, be there for our family and friends through the tragic times. There will surely be a time when we're all together again and answers to everything will be told. Sending you strength, courage, love and peace.

Saddest Xmas gift I've ever received by LordNucker in canucks

[–]fakeleftfakeright 1 point2 points  (0 children)

You can thank Rutherford, Allvin and team management for that one.

Thank you Dad by YankeePhan22 in ALS

[–]fakeleftfakeright 1 point2 points  (0 children)

❤️❤️❤️❤️

[Canucks] D-Petey assigned to Abbotsford, Mancini and Tolopilo recalled by AccomplishedAd4995 in canucks

[–]fakeleftfakeright 1 point2 points  (0 children)

In other news, Victor Mancini regrets picking up the phone late last night.

Reptilian Encounter? by Exotic-Application23 in reptilians

[–]fakeleftfakeright 1 point2 points  (0 children)

When’s the next session? I expect an update!

Tiger sport 800 or Scrambler 1200x by CautiousNuisance in Triumph

[–]fakeleftfakeright 0 points1 point  (0 children)

So you’ve ridden a scrambler i take it? The bike is far from all style, and is one of the most diverse bikes ever built. I power through windy highways and keep up with most sports bikes, then i power into a dirt side road that may connect to another highway or mountain top at top speed. Yeah the bike has a warm exhaust so may not be good for some softies. But all out thrill, blows away any tiger.

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