FND Conference Questions List Update (I think)

Hi my community friends.

I have written this twice and lost in it "space" twice.

I try again...

Seaotter2020, who seems like a delightful person, wrote all of us to say there is a parallel effort to accumulate questions for a video Q&A at the conference on patient concerns.

This was a brand new but pleasant surprise to me.

Seaotter2020 offered to include our accumulated questions for consideration in that Q&A.

I will most certainly get what I have to FND.hope at the conference. I will also have as many paper copies on hand myself if they will allow people to pick one up and read what is on our minds.

I will be available to pick up any feedback and answers to our questions and try to report back to this community.

I think the video Q&A is great. I hope they include some of our questions. Anything that gets more exposure to our concerns and facilitates getting answers and help.

We all doing best we can. Thank you seaotter2020.

Good night.

Dan / Seattle

32 Replies

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  • We are hoping to have some of the interviews with doctors available for our Awareness Day April 13 th. On the FND Hope website.

    If you are on Facebook with FND Hope you can see the Emory link. If not and you want me to post here I can.

  • Lauren.

    Not on any social media other than this forum. Thank you.

    Dan / Seattle

  • Yes please, as have deleted Facebook as got too upset 😭 I know others life goes on but just couldn't cope anymore.

  • Good Morning, I like Dan am on no social media other than this site, if you would forward that link to here or my email grandmas16@gmail.com I would like to see and read it . Thank you, Have a good trip Dan and family, you are all in my prayers. Wish I could have been there but health does not permit at this time. God Bless each of you, Cathy

  • Cathy.

    Always think about you. Hope you out here to Puget sound for visit. If remember, there lots of family here for you.

    Thank you for well wishes. Hope to share useful information and to let them know our concerns and questions.

    You always with us in spirit. Always will be.

    May God bless each of us too.

    With my love for your strength and outreach.

    Dan / Seattle

  • Thank you Dan, I can't wait to hear all the details of the conference and what progress if any is being made in our fight for fnd awareness and cure. Travel mercies, Cathy

  • I pack my sea salt and water Cathy.

    Smiles....

    D

  • I never did ask, has it been helping? The water and salt?

    I am having my ankle bracelet test done on this Friday. I do not think I will get the results till next week. My Dr. says depending the results if they are positive will have to go see the vascular surgeon. Also, the rheumatologist Dr. could not get me in until end of April, I asked to be put on a cancellation list so prayerfully something will open up. Just a quick update on whats been happening here. :-)

  • Cathy.

    Thank you for letting me know about you. I want you to be first in line to be seen and tested.

    I know I am being taught patience again from above. Keep filling in the blanks when you get results or new symptoms.

    The salt is a lifesaver. If you understand why or how it works, I want to hear your thoughts.

    You really are very smart about this stuff Cathy. Watching how this goes for you will tell me a bunch.

    Have always craved the water consumption. It is like it has to stay in a range for me as part of staying stable.

    But Cathy, I don't understand pulse rate in mid 50s even when I am up and about. So much to think about and consider. The weakness has become overwhelming.

    You very special to me and Patricia and Andrea. Take care please.

    Dan / Seattle

  • Very weak today also. Each day is different and so wish I understood the whys. Today cannot get across the room without shortness of breath, cant seem to get the air in. Whole body is in shutdown mode.

    Usually your pulse skyrockets with Pots and blood pressure drops very low. Not sure why your pulse is so low. Is your blood pressure high or low upon standing, particularly in the morning? Morning with Pots seem to be the worst until we can get enough water into us from the night. Although I tend to drink all night long, have to have about 16 ounces during the night. i wake up to drink, I am just so thirsty all the time. I eat my cashews all through the day, it seems almost all I eat my family says, that and of course my avacados but they are at meal time, lol. This thing is just a constant juggle, I just so praise the LOrd for each day, its challenges and victories. I pray you can get both help and answers for both you and your daughter, maybe this weekend will be the start of great things.

  • Cathy. I leave you be to rest now.

    So funny, I live off of avocados and nuts too. Laughing for both of us. Blood pressure hangs out low side of normal but never seems to get going. Maybe why I stay so cold.

    Bye for now luv. Need to rest.

    Prayers and thanks.

    Dan / Seattle

  • So Cathy and Dan watching your posts. I too have POTS. Has anyone ever checked your adrenal or pituitary gland?. I had had brain surgery and my pituitary gland had shut down. Before the adrenal crisis I could not sit up in bed without passing out. My head was thrust backward and I would have seizures with any sound. Now I am on cortisol which helps. But now my pulse races , my blood pressure erratic and I am sooo parched thru out the night. What are you two saying about salt?

    I used to crave pickle juice

    Strange I know

  • Lauren.

    Keen observations.

    I am watching what is going on in Cathy. Waiting for more as test results come in for her.

    Coincidence, I was drinking pickled beet juice out of container. Ate all the beets last night.

    For me and daughter, eating salt is a stabilizer when abnormal head movements start and then spread to body. Cathy had passed this tip on.

    I do not drink thru the night but wake up and start drinking water even before coffee which never used to do. Again, Cathy advised to keep hydrating. I agree as thirst really builds up. Now, blood pressure / pulse rates again out of whack causing temperature dysregulation in body extremities and problems staying upright. Everything on low side.

    You have had pituitary shutdown and brain surgery so I have no problems. Worried about Cathy because of higher ANA titers. Never had full adrenal workup.

    Docs all say this FND and pass on investigations. Have to wait for more developments. Really out on tightrope as barely walking.

    Do not let yours go to far Lauren before getting help. You have lengthy history to get attention paid quickly and I hope you will be extra cautious.

    World needs you both. May need you as medical experts because you both very attuned.

    Take care. Always in prayers.

    Dan / Seattle

  • you are so kind. I have more Doctors than I should - I have had a hand the size of a baseball glove most mornings...they are also sending me to the UNDIAGNOSED clinic at Harvard! Do not give up. Just had sleep study so waiting on that. Allergy and Immunology just called me to come in because of a test I had done in August of 2016. I could not believe it! One more appt. I have seen 13 doctors for my hand. My big complaints are my legs. I had beautiful legs, I was a runner. Now I have a hard time walking far. I get up several times during the night to stretch them. I tell almost nobody in my family anymore. I don't wan them to worry. I have so much gratitude for the FND Hope community. Good luck to you this week. Please enjoy the conference . Love to hear your feedback!

    Xxoo Lauren

  • Lauren.

    I from the south so I call you "sweetheart" because that is a term we use when we as a family become endeared to someone.

    You are our family.

    You must be exhausted from all that interaction with medicine.

    So I am just going to simply say, my family never gets tired of listening and will always care about you.

    That is how we start. Never look back. We walk together.

    So I want to do some reading. I have been reading for so many years mostly to keep promise to wife and daughter not to give up. I think God wanted me to know really arcane stuff about neurology so I could listen to what people are really saying. Yet, I do not remember much because brain is fried from fighting these symptoms.

    Yet, here we are again. So let us start.

    By the way, nothing has changed about you, only the way you see them. Legs may not run anymore, but as my wife tells me, I still have the best looking ones she has seen! So laugh tonight.

    But we start reading and figuring out you.

    Biloxi, huh? That right there makes you a good person.

    Rest. Shed the worry for a moment. Then keep posting your symptoms.

    We need to know what in the world is happening.

    Lauren. I told Tony in UK we will put him and Kim in a protective bubble. We will put you in one too.

    It will be OK.

    Family will always be here. Always.

    Dan / Seattle

  • Interesting...I constantly have dry mouth during the day, and dry eyes during the night. I use a pharmacy strength eye gel for my eyes, much stronger than over the counter version of the same product with same name.

    During the day, I carry a bottle of water with me all the time. Coffee makes me even thirstier.

    Someone gave me some salt from the Himalayas (I think) and said that it contains a lot of other mineral salts, and not so much of the Sodium Chloride that makes up our usual table salt. I use it, and it doesn't seem to interfere with my thirst levels.

    I also carry a Biotene spray bottle with me at all times, especially during car rides. For some reason, the moment I sit in the car, my extreme thirst gets turned on like a switch being thrown. My mouth and throat instantly turn to velcro and are very painful as I try to pry the two velcro-like surfaces apart. I simply can not drink the gallons of water my body thinks it needs.

    I have discovered a point just below my knees that affects my thirst levels. Sitting with knees bent as normal, rest the palm of your hand on the top of your knee, with your fingers hanging down in front of the knee cap. Roughly under the pointer finger, you will find a sore spot (when your fluid levels are playing up). Rub it gently and see what happens. You may have to move your finger around a bit to find the sore spot, but you'll know when you find it!!!

    Mr Houseman, be safe on your trip and don't let yourself be overwhelmed too much - thanks for doing this on behalf of us all. It's a bit difficult for me to get there...from Australia!

    ...and Ms Sea Otter (Lauren), be well. Just take it one day at a time, and don't let yourself get too overwhelmed. I have just had one of those years where I had too many things go wrong all at the same time, but I feel like I have just emerged out of that gloom and overwhelm, and found that the sun is still shining in the sky during the day and the moon and stars at night time.

  • VivienneWaterworth.

    Hi my friend Vivienne.

    You always give me such new thoughts to process. What a great perspective you have. Thank you.

    Waiting at gate for plane.

    I go to work on all this and sure to come back many questions.

    So glad you here and sharing.

    Maybe brain cells feel better with all this to consider. Hope good day.

    Your friend.

    Dan / Seattle

  • Hi VivienneWaterworth, I too am thirsty all day and night, unable to move in night to get drinks so have been trying to remember to drink as much water during the day, sometimes I've done it but others I haven't as thirsty during night, when I get in a car my teeth ache and my left side mouth goes numb, this happens every time, even short trips. But sometimes at home it happens too, I've tried heat packs but really feel I want to smash my teeth together to release pressure. Forgot what else I was saying. Lisa-anne 😂😂😂

  • We are so lucky to have you both on these pages. Everyone helping each other . I need to spend more time here. Thank you all for your advice. I feel blessed to have had the brain tumor that has put me on this path. God is good!

  • Sea.

    God is good. Angels with us. Thanks is given now that you are with us too. As we say daily:

    " Keep it between the lines today"

    As you travel the path to discovery and wonder.

    I thought about your condition last night. Many questions for you.

    Want to know more about the hand and the leg function. I remember my baseball glove so trying to think about your analogy. Leg dysfunction also tells much but need to know what are limitations.

    Thinking about extremities like arms, hands, feet and legs tells us so much about how to look for cause. There are very specific pathways and sensory / motor connects.

    So, I have extensive confirmed damage in my nerves that produce neuropathy and connected muscle atrophy. Condition can involve antibodies such as ACHR, etc.

    This is good starting point for your focus. Then, we work backwards to CNS, autonomic and brain.

    Observation. Maybe with you everything was focused on brain because of tumor. Rightfully so.

    But I think body telling us many things from all parts of it.

    We just have to figure out what it saying.

    Awfully tired. At airport gate and head moving about.

    If you OK, we keep talking. You family and we got to make your doctor's think. Very important.

    So enjoy day. Laugh and live. You touch lot of lives. Keep at it.

    See you later dear. Angels watching.

    Your friend.

    Dan / Seattle

  • Dan you make my heart sing. Safe journeys . Stay hydrated and rested. When you get a chance go on the website and look for Bridget's picture so you can identify her. She is speaking at 10 am, I gave her some of your questions to ask the doctors tonight she will be meeting with .... so hopefully can get some of that on tape, no promises tho... Wouldnt that be great... Hopefully after event we can speak in person. you seem so informed. I am tired of Stanford and doctors with no answers. too much is going on after the brain tumor for it to be just that....xxooo

    YOU and your family are a gift to this community. Be safe.

  • Morning Sea...

    Awake here in Atlanta. Just wanted to say morning. Thank you for your words of joy. Family will take to conference this morning. Hope it a better night's rest for you. Many people on plane may not have seen movement disorder like this I think. I caught a following. Laugh a bunch today and soak up life.

    Enjoy. Be back soon...

    Dan and family / Seattle

  • Seaotter2020

    To our newest daughter Lauren. We have grown so attached to you. It is like conversation over Sunday dinner only another daughter now has a place setting at the table - that is you!

    I write to you first this evening. It was because of you that I sought out Bridget at the conference today.

    We hugged and chatted briefly. I gave Bridget the list of actual questions. She then made her presentation.

    Lauren, Bridget did a great job. She really advocated for us as a group. I was not only impressed but blown away at her tenacious spirit of advocacy for patient and family. I felt very lucky.

    As the day wore on and the doctors and providers lost focus and started bickering with each other, I started to fatigue and become irritable.

    I remember during a comment period, that Bridget returned to the microphone and again forcefully took the side of patients and families.

    I clapped as loud as I could, tossed my glasses on the table and declared " finally, someone speaking to the patients in the room instead of speaking about us" as though we were some lifeless object to be managed.

    I had had enough of doctors, high fived Bridget as she went to her seat. I got real intense in a follow up conversation with a provider before leaving the room.

    I was so proud of Bridget, nothing but admiration for her passion and focus. She is a real good person.

    Somehow in all of this, the truth emerged. We are alone in our battle except that we have people like you and Bridget standing in the fight. No better partners to have.

    There is much, much work to be done by medical providers before we see any progress coming our way. But like you, I am darn thankful and blessed to be part of our group. Right now, we know more about this disorder than they do. And that, as Lily Tomlin, used to say, " is the truth."

    Thanks for being family. More to come later. We all are give out.

    Night.

    Dan / Seattle

  • Dan, I am crying as I am reading this. I am so pleased that you were there for Bridget and she was there for you. We have worked hard on her speech. Last night at midnight east coast we practiced again. I have not talked to her yet but will soon. Thankyou for inviting me into your wonderful family of pioneer spirit and insurmountable strength! Thank you for also representing 10 s of thousands of sufferers like yourself! That took energy and dedication to go!

  • Sweetheart. We cry too. Speech was just terrific. Very Galvanizing. Thank you such hard work. Patricia and Andrea want to start advocacy in Seattle. Know you working on Stanford. Maybe you guys try to tell us how to be part of your effort if you have us. Never seen these two so determined but we need your guidance.

    My only value is love for listening and caring for folk one by one. No one fall thru cracks.

    I did give whole list of questions to Miss Beth Rush ? from Mayo in Florida. I believe she only doctor there I could trust. She very emotional about people effort to be heard. Those who could not be there to represent self. She got list to Karen who was conference moderator.

    Karen kept coming back to family to talk to us. She did not know what to do with some of questions. That told me everything. I told her this was our concerns! How do you not know how to address our concerns! We are your patients ! I felt so invisible. Doctors all looked so helpless and perplexed. I felt great anger because I let community down. No answers yet.

    That is now behind us.

    Your family here in Seattle ready to help you and Bridget. We good folk and want do right thing.

    Docs are lost. Really lost. But we can not help docs. We have real folk suffering who need us now. Off we go.

    Our spirit with you. We fight to end whatever that may be.

    Many blessings as we have received Grace again in the form of truth. So we trust with faith and reach out.

    Give bear hug to Bridget and her to you from all of us. We not gonna be put down meekly.

    Dan / Seattle

  • My strength does not come from me. It comes from Him. The light needs to be shined on the ignorance.

    YOU have let no one down. It has exposed you to the needs we have as a patient community. There is much you can do while protecting your privacy. 31 volunteers. None paid. Most sick . One voice alone makes no sound. Together we ROAR like a lion. We need each other.

    Wishing safe travels.

    Xxoo

  • In attack cycle. Down for days

  • ❤️ ❤️

  • It be okay. System shut down. Neurological function turned inside out.

    Brain not perpetrator. It is the victim.

    Can not read and process for while now until pieces come back together.

    Know you have written much but need time to restore capacity to absorb.

    Do not know all the keyboard symbols so just send you our love, admiration and appreciation.

    Must go. Heavy abnormal movements cycling about.

    Must stop.

    Family here for you.

    Dan / Seattle but in Nashville right now.

  • Oh Dan! So sorry!

    Had MRI on Monday and a nerve block yesterday Between paratransit bus and Uber I went down hard. But I am back up again today. 4 years ago it would have lasted weeks to get a couple of hours.

    Need my brain. You need yours.

    Xxoo

  • Miss Lauren.

    You have been roughed up. Bless your heart. Here for you. That brain of yours is needed. Your spirit and thousand other God given qualities that you possess also needed.

    But let rest and recovery take precedent. Whatever you need, just call. Must provide for family. That always comes first.

    Contact when you feel like it. I have been given another day to try and do good.

    Our family love.

    Dan / Seattle

  • oh dan, I'm sorry. I hope you are feeling better real soon. rest and recover. we understand. sending prayers and positive thoughts your cycle is a minor one. hang in there.

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