Amanda
Forum Replies Created
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https://als-ny.org/navigating-als/patient-grant-program/
https://everylifefoundation.org/financial-support/ (list of grantors)
https://lesturnerals.org/support-services/grant-programs-equipment-loans/
https://www.needymeds.org/copay_diseases.taf?_function=summary&disease_id=151&disease_eng=Amyotrophic%20Lateral%20Sclerosis%20%28ALS%29&dx=18&drp=als (list of assistance programs)
https://www.youralsguide.com/resource-list.html (list of assistance programs)
https://www.healthwellfoundation.org/fund/amyotrophic-lateral-sclerosis/ (Medical expenses)
https://www.welcomefunds.com/financial-assistance-lou-gehrig-disease.html (convert life insurance to health fund….need life insurance of $100K or higher)
https://rarediseases.org/patient-assistance-programs/financial-assistance/ (list of grant resources)
https://www.racingforals.com/patient-assistant-van-fund (transportation grants)
https://www.alsfindingacure.org/author/phama/ (list of assistance programs)
https://chivecharities.org/ Chive Charities is a 501(c)3 organization dedicated to supporting underserved veterans, military families, first responders, and rare medical diagnosees with life-changing grants.
https://littlezebrafund.org/mission genetic testing
https://everylifefoundation.org/rare-scholarship/ (education grants)
https://www.alsinwonderland.com/ (Arkansas resources)
https://www.thesusiefoundation.org/programs (medical expenses, transportation, home adaptiations)
christopherreeve.org
Priority Impact Quality of Life Grants - Get Support
Priority Impact Quality of Life Grants
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My case of ALS has mostly affected my diaphragm. My FVC was around 35; dropping from 90 just a few months earlier. I also had to get a peg. From what I’ve read I would not consider this as an option for myself. I do have a NIV and that helps tremendously. I am also on Riluzole, and QALSody. Since starting the QALSody in July, my FVC has increased to 41. I have a lot of faith in my medical team and they have not recommended this or brought it up. I think this would be a case by case situation, especially since no two cases of ALS are identical. There are so many things to consider.
Amanda
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dbvb12,
I’m so saddened to hear about your experience at the ALS Clinic visits. No one should feel like a number. I get that sometimes doctors do not have all the answers and ALS can be confusing, even to the specialist; however, you should feel confident in the team looking over your/pALS medical conditions. The team I see at the University of Miami is awesome! I’ve had family members see Dr. Miller’s team at The Washington University in St. Louis and they have wonderful things to say about them. Is there another clinic that you can go too? Is there anyway to share your frustrations with the team that may help them approach cases differently?
Amanda
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Here is a thought, could you reach out to the local ALS Association chapter and see if anyone can advocate on behalf of pALS? Perhaps a social worker can go with you?
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I’ll be traveling by plane for the first time since my diagnosis. I have to bring my ventilator. I can walk although long distances can be a challenge and time consuming. Our airport is huge so I’m a little nervous. Does anyone have any suggestions or tips for me? I’m flying from SW Florida to New Orleans and back :).
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There has been and continues to be research on this topic. There is a lot that can be found on line and in some medical journals. Here is a place to start reading https://www.als.org/sites/default/files/2020-04/navigating-als_military-veterans_als-in-military-white-paper_0.pdf
Or https://www.als.org/navigating-als/military-veterans/ALS-in-the-Military
and click on “review the report.”
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I’m so happy!! Wednesday I had my 6th QALSody treatment in Miami. They think my ALS progression has plateaued!! It’s on PAUSE!! This is the 4th month of treatment. The doctor said that they tend to see this step around month 6th. I’ve also gained a few small things back. I walked up two flights of stairs last week. I even alternated feet for each step. I didn’t even use the handrail to pull my bodyweight up, just for balance. I was a little winded at the top, but in July I couldn’t step up 2 steps on a bad day. There are a few other things too! I’m so excited. I have to remind myself that this is a treatment and not a cure. However, for now my quality of life has improved!
I keep calling this a scientific miracle 🙂
The doctor did say that this should pave the way to find treatments for both genetic and sporadic ALS! I sure wish I had a timeline to share, but I don’t.
I don’t want to write a book on here, but I did want to share the good news!
Amanda
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Optimist,
This would be a dream come true! From my experience the ALS Association has some information
https://www.als.org/blog/ssdi-and-medicare-faq, but of course not all. I know that our forums would not be able to handle this undertaking, but I wonder if we wrote letters or sent emails to the National level ALS organizations, if that would help? The other obstacles, as I am sure most are aware of, time and money to achieve these goals. Check with your local ALS Association Chapter and see if they have any kind of campaign or suggestions.
https://www.als.org/blog/ssdi-and-medicare-faq
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I’ve seen some centers offering Ketamine for ALS, but I haven’t seen any research showing how it directly impacts ALS symptoms themselves. I have a friend who gets infusions regularly to treat severe bipolar and it has changed her life. She experiences a lot less depressive episodes and she swears by it. I can see how it might help someone’s mood. Having ALS is definitely hard on a person’s mental health. The claims I’ve seen on websites read very vague and “ify” as far as actually helping reduce the progression of ALS. Things like, “Could possibly” and “Might” are used often. Personally, I would encourage anyone to talk to their doctor and see if insurance may cover treatments especially addressing mental health. As always, do your own research and know the pros and cons and have realistic expectations!
Amanda
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I love it!!
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Thank you Roman!! What do you think of the presentations?
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Coming from NOLA, I was a huge Steve Gleason fan!! I was heartbroken when I heard he had ALS. However, as with any situation, Steve has taken a challenging situation and made a difference for his team — us, the ALS community! Thank you for sharing. I have heard so many amazing things about this organization. NO WHITE FLAGS!
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Bravo for advocating and not settling for appropriate care! Are there any specifics you can share?
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It sounds like your sense of humor gets you through a lot of things!! For me, that’s the best way to approach new situations or challenges. I’m glad you were able to take your trip and made it home safely!
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Hi Cheryl,
How are you 6 years in? Do you have any words of wisdom to share? Is there anything you do that you think is making a difference?
Amanda
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Terry,
The research they are doing now is looking for elevated biomarkers that seem to show up prior to diagnosable symptoms. The goal is to be able to start Tofesen/QALSody at this stage to prevent the onset of symptoms. It’s amazing how far they have come.
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Hal, good points!! I do continue to advocate, volunteer and donate to ALS research as much as I can which continues to be at least once a month. I suppose “fight” may not be the right word, I could have found a better word. I will always, always do anything I can to support ALS research or help any and every pALS I possibly can. I’ve watched 15 family members die from ALS. Several of my family members continue to volunteer for medical research, raise money and are very active in ALS communities in a volunteer capacity.
Thank you for your insight! As always, I appreciate your input and thoughts.
Amanda
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Hi Peter,
I hope this is helpful.
Yes, I believe that study has started.
Contact form https://www.alsatlasstudy.com/
https://classic.clinicaltrials.gov/ct2/show/NCT04856982
Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):
alsatlasstudy.com
The ATLAS Study is now enrolling adults who are carriers of certain SOD1 gene variants. See if you may qualify for the ATLAS Study.
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Doug and others,
Thank you for all the great information, thoughts and opinions. One of the things I appreciate about our online community are these types of informative discussions. Sometimes emotions or beliefs cause people to see things differently, and this is appropriate. Sometimes, discussions don’t go this smoothly, although that is rare in our community. The respect and appreciation that our members show for one another and their input is admirable.
Doug, I sincerely appreciate all the research you share and your ability to break down some scientific language into something we can comprehend. Please continue to do so! I find it very helpful (and I’m a moderator, LOL).
Cheers to our wonderfully supportive community!
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1. Focus on the positive, even when it takes work!
2. Accept help. Ask for help. Be specific with how someone can help.
3. Not every lesson has to be learned first hand! Learn from other’s with ALS.
4. Live in each moment, cherish each moment, and LOVE! Love a lot!!
5. It is ok to feel overwhelmed and frightened! In fact, it is natural when you are facing a disease like ALS. Feel what you feel, and try to move past the scary stuff so that you can enjoy the good! It’s hard sometimes, but better for my mental health.
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Mel,
I missed this post!! I have to read up about it!! Anything new to share??
Amanda
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I agree whole heartedly agree. On a side note, much of what is recommended I have doing since I was in my twenties. I eat blackberries, raspberries and blueberries almost daily!
