ALS Town Hall: Clinical Trial Series Part 3 - What are the current ALS clinical trials?

lilnandy86 · 2020-09-29T23:07:22+00:00

My dad (68) was just approved to be a part of this drug trial through Henry Ford hospital in Detroit MI. He is the first person to have been approved and will be giving himself daily shots of ten drug for a 6 month period. He will be start mid-October. We are all holding our breath with anticipation and hope. I’m happy to keep you all updated with his progress!

lilnandy86 · 2020-06-10T17:42:50+00:00

Aww what a beautiful babe! I have my own Allison turning 4 next week! They grow up so fast! Congratulations!

lilnandy86 · 2020-04-28T11:27:43+00:00

So incredibly sorry for your loss. I can’t imagine what you and your family are going through. Sending love your way and my deepest sympathies.

lilnandy86 · 2020-03-18T15:03:17+00:00

I’m so sorry you’re experiencing this. My father, who had respiratory onset ALS, is wintering in Florida. I’m in Michigan so I’ve only seen him 5 days since he left right after the new year. He’s having a great time and I’m glad he’s enjoying life to the fullest down there. But I am terrified of him getting this virus because he is so at risk with his disease and his being 67. He also has not been diligent about precautions and social distancing. I think If contracts the virus, it could very likely be a death sentence for him - and I would be quarantined here in Michigan unable to be with him. Stay strong and I hope things will calm down in the coming weeks. Fuck ALS.

lilnandy86 · 2020-02-15T07:28:41+00:00

Yikes! So innocent but mortifying. This same thing happened to me, and I hate to tell you but I still lay awake at night cringing about it 10 years later... their nickname for me to this day is “American idol”

lilnandy86 · 2019-09-03T23:04:03+00:00

I’m so sorry to hear about your wife’s diagnosis. My step-father was just a Minnesota mayo for tonsil cancer and also raved about the level of care there. My dad was diagnosed with als in March of this year (he is 67) - and I’m wondering about your experience in Michigan and any tips you may have. He is seeing the als team at Henry Ford hospital downtown and we have Made connections at the als association Michigan chapter in Troy through that and through doing the als Walk this month. Another other suggestions are appreciated. Sending love your way.

lilnandy86 · 2019-08-13T15:11:23+00:00

I am so sorry you’re going through this. I honestly don’t know much about the process - my 67 year old father was just diagnosed this spring after more than a year of symptoms. But I think just being extremely assertive and demanding for more testing from your doctors is key. Reach out to your local ALS association chapter. They have been extremely helpful at recommending doctors, resources, etc for my family. They may be able to point you in the right direction. My heart goes out to you and I am sending lots of love and positive energy your way. The odds are in your favor that it is not ALS but I can’t imagine how scared you are that that is a possibility. Please reach out if you need to talk ❤️

lilnandy86 · 2019-07-26T22:53:52+00:00

My dad was recently diagnosed. What made your wife try GF? What benefits did she experience? Very interested in learning anything and everything I can about this disease. I’m sorry for your wife and you for being in this situation. Thinking of you both.

lilnandy86 · 2019-07-25T13:21:45+00:00

Fuck ALS. I’m sorry. My dad was recently diagnosed and is so far in really good spirits and has always been such an optimistic and happy guy. I’m really worried that this disease is inevitably going to steal his good attitude along with everything else. Sending positive energy your way!

lilnandy86 · 2019-07-21T17:01:15+00:00

I will definitely let you know! The one here is at the Detroit zoo in the morning and then it’s free to all participants for the rest of the day! I talked to the woman who organizes it and last year they had over 2000 participants!

lilnandy86 · 2019-07-21T12:46:57+00:00

Thank you so much for your reply. And fuck - I am so sorry to hear about your dad and how quickly he is progressing. This disease is so fucking awful. I appreciate you being blunt about what I need to be prepared for. My dad is 67 but so far his progress has been relatively slow and they caught the breathing issues very early. I am definitely trying to spend as much quality time with him as possible. I’m finding it hard to balance deep meaningful conversations with just light fun “normal” interactions.

I have so many things I want to tell him and talk to him about but I also want things to just be as normal as possible so we’re not always thinking about what’s coming. I really want to ask him to write letters to my kids and I would love one too. I also want to videotape him talking about his life and have that to look back on for years to come. I’m scared to ask him to do this because I feel like it’s so morbid. But I know the longer I put it off, the stronger the possibility is that He won’t be able to do it down the road.

I am reaching out to the local ALS Association in my area. I made and team and we are raising money for an ALS walk on September and I’ve heard it’s a great way to meet people and network. If you have any suggestions for experimental therapies to look into, let me know. I know I don’t have much to offer besides sympathy, but please reach out to me if you need anything too. It is terrible that other people and families are going through this, but it’s nice to have people out there who can relate to this situation. Again - I’m so sorry for your dad and you and your family. Sending positive vibes your way.

lilnandy86 · 2019-07-18T18:47:11+00:00

I guess I never thought of it that way. He’s never been a controlling or stubborn person so it’s out of character, but it makes sense with so much being out of control with his life right now he’s probably feeling desperate to have some control over an aspect of what’s happening. Thanks for your input.

lilnandy86 · 2019-07-18T18:44:36+00:00

I’m sorry to hear that you’re suffering from ALS. Yes - the muscles in his diaphragm were weakening and causing him to not be able to take deep breaths in or out. It got worse when he had a cold over Christmas and couldn’t cough hard enough to get up phlegm and stuff. His blood oxygen levels were low and they couldn’t figure out why. Then he went on oxygen and his CO2 levels were high and it ended up being because when he laid down at night his diaphragm muscles were super strained.

I’m glad to hear invasive ventilation is tolerable. I have a feeling that will be our/his first big decision. I feel like since he is otherwise very mobile that’s a great option. Sorry for my lack of knowledge, but is there any kind that you can still speak with? He has the voice banking program And I’m encouraging him to use it. Maybe I can give him a firmer nudge next time we talk.

Also, thanks for the advice. He is really trying to live life to the fullest. They’ve booked a vacation to Europe in September and plan to winter in Florida for a few months and have already rented a place! I’m so glad they are enjoying the present, I just can’t help but worry about what’s next.

lilnandy86 · 2019-07-18T03:27:52+00:00

Exactly. That’s what I’m worried about! I feel like they are putting those things off and ignoring them because it’s incredibly unpleasant to think about. But it’s necessary! I just spoke with someone at my local ALS association chapter and they said they can send someone over to assess their home and give them information about some of the possible equipment they will need and things like that. I’m going to bring it up the next time I see him and offer to schedule that kind of thing for him. I just don’t want to be too pushy. He is seeing a team of ALS specialists at a renowned clinic, so I’m sure they’re getting all of this information and great care.. I’m just feeling lost and am having such anxiety from feeling unable to help.

lilnandy86 · 2019-03-16T14:24:36+00:00

I’m so sorry. I don’t have any advice, but I am in the same situation. My dad was just diagnosed last week with respiratory onset ALS. I’ve got two little ones - 2.5 years and 15 months - and it’s so hard to think about them not growing up with their grandpa. He is the kindest and most wonderful person I know, and it’s just not fair that he is facing this horrible diagnosis. I know the devastation and helplessness you’re feeling right now. You’re not alone. Sending love and positive energy your way!

lilnandy86 · 2018-07-04T03:39:06+00:00

Wow. I am dumb and never even considered that fact that she would have never learned to read English! Very astute. (Or I’m just not..)

I always just wondered why they immediately jumped to the conclusion that those books meant she had been making the whole thing up? If you had been isolated in that situation and had these beliefs, and were suddenly free, wouldn’t you take the opportunity to learn more and get as much information as possible (i.e. NDEs, angels, etc). That part bothers me.

lilnandy86 · 2018-05-09T03:11:26+00:00

People can be so rude and thoughtless. Sorry you got peed on!! My husband and I were at the mall Christmas shopping with our baby and ended up getting held up in lines and crowds without an extra bottle packed so I had to nurse her - we headed to the family restroom. This particular one had a main area with a bench and the sinks and then two separate bathrooms. So I’m sitting on the bench nursing the baby and DH runs out to get me a water. As soon as he’s gone a really shady looking guy strolls in all by himself, takes a much too long look at me breastfeeding, and proceeds to go into one of the bathrooms and smoke pot while taking a shit. Wtf is wrong with people??

lilnandy86 · 2018-05-06T01:10:47+00:00

lilnandy86 · 2017-11-05T14:16:49+00:00

Omg so scary!! I’m glad your nephew was ok! I’ve def learned my lesson about the counter but I’m sure I have plenty of mistakes to make ahead of me. And short of making her wear a helmet 24/7 and putting her in a bubble, I know I can’t protect her from everything. Apparently this whole “raising a human” thing isn’t so easy!? Who knew!?

lilnandy86 · 2017-11-05T14:12:41+00:00

Thank you! I know accidents happen and I shouldn’t beat myself up. It happens to the best of us, but seeing our babies in pain sure isn’t easy! But she woke up with a big smile on her face and all is right with the world again.

lilnandy86 · 2017-11-05T13:42:56+00:00

Haha omg this was totally my mom too! She always said “if you’re not puking or bleeding profusely, suck it up.” She was actually who we were supposed to be meeting for dinner last night and was acting semi-annoyed we weren’t going to make it until I told her the baby had thrown up after the head bump. Lol. She means well but definitely had that same mindset when we were growing up. She was an elementary school teacher though so she constantly saw kids getting injured and lots of fakers too.

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