What should I request at Clinic tomorrow?

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MupstateNY

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Aug 15, 2022
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424
Reason
PALS
Diagnosis
11/2022
Country
US
State
NY
I'm finally getting my turn at my closest ALS Center tomorrow. Here's what I have on my list to ask about:

  • Hosp bed with "cardiac chair" (reverse Trendelenburg) position to help stretch your back and use a urinal, among other things.
  • BiPAP, for reasons of better humidification, better safety, and a smoother algorithm, I would really try for the Astral for portable NIV, or a ResMed BiPAP at home.
  • They connected my BIPAP to a humidifier, provided inline inhaler/nebulizer treatment with my ventilator and also provided chest compression therapy.
  • Home modifications
  • Relyvrio?
  • Liquid Ca and Mg?
  • Feeding tube
  • hand splint
  • Cough assist?
  • Suction gadget
  • Better keyboard for typing
  • Adjust my oval-8's for typing
  • Foot brace?
  • Check my PT routine
I'm currently taking Riluzole, Radicava, Oxybutonin for pee urgency and dribbling, Zoloft 50 mg, Protonix for scratchy voice.

Anything I should add to this list?
 
I think that if this is your first visit to a client, that it would not be a shopping trip but more of a get to know you meeting. They will have to figure out where you stand with your progression and what is required then help you aquire the needed equipment and the cost my be up up to you.
Al
 
Mupstateny.
Our ALS clinic experience with nypresby columbia:

- the pulmonary therapist decides the pulmonary devices for which you qualify. We still dont have a bipap, because Tom's beathing is good.
- in our experience they do not order things in advance. It is as needed.
- insurance will decide what hospital bed they will pay for, and all else is paid out of pocket.
- discussing Meds is a good idea, especially Relyvrio. If you have mucous. Dribbles. you should ask about Nuedexta. If you have not been on Relyvrio you can take TUDCA Otc until start Relyvrio, then you would stop TUDCA (Amazon).
- early feeding tube is better than later. A caregiver will need to clean the site and flush daily with spring water.
- other items on your list, i dont know. I doubt they will help with keyboard for example.
- We did get an RX for PT, but we had to find the right place ourselves (that was not easy).

Take care.
 
Remember the interactions between Relyvrio and Protonix. Relyvrio will increase blood levels of the Protonix, so your dosage may need to be less than you would normally take.
 
Great list to discuss. It will be an exhausting day so take plenty of water and snacks with you.
Maybe prioritise the list for what you feel you need right now. That way if you don't get to everything you know you got to the most important. Of course different questions will also be for different specialties so you can group things that way as well to help cover all you need.
 
Thanks, all. I am wiped out (was there from 10 am to 4 pm, and it's a 90-min drive each way, and it was pouring rain and foggy). It went well and I'll report soon.
 
Rest up, those clinic days are brutal. We can wait 💚
 
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Here finally is my Clinic visit (1/4) report, and what has happened since then.

The PT was helpful - endorsed my home routine (established with my local PT) and approved AFOs (metal not plastic, no hinges). OT -- waste of time. PFT 66%/60% (that was a shock). Everyone and their cousin came into my room and stayed a long time, meaning no one else could come in. Finally met with director, who agreed I need suction and hand splint at night. Against "early" feeding tube but said she would order it if I decided I really want it now. Plans made to start Relyvrio. Lymphocytes low, should discuss with primary.

I discussed tube with primary next day, she agreed I should go ahead. I sent message to clinic. But then clinic became unresponsive. No orders submitted for anything. My primary called them and said they have to respond to my portal messages! They started to respond and order some things, but then petered out again.

Then I asked the nurse for specific info, after following up with ins. on that CT scan authorization (ins. was waiting for the clinical notes, but nurse said ins. hadn't responded yet. He said authorizations are a different department, wouldn't give me the info (e.g. Neurology? Interventional Radiology? No answer). Then he chewed me out and said I have to let them do their job. I responded, "To be honest, I don't understand why I would be scolded for trying to advocate for myself and do teamwork with my providers." For the Riluzole, he had asked me to call ins. to move things along, and I did (and thanked him for the suggestion).

Made phone appt with clinic social worker (SW) for this past Thurs. Sent her details of frustrations with getting CT scan authorized as prep for tube, so she could do some leg work and problem solving. But in phone call, SW was extremely vague, said everyone has their role -- but wouldn't tell me who has which role. Then she said any delays are my fault because there's something wrong with the way I speak to the nurse. But I never call him -- I don't like to sit on hold for an hour and then have to leave a message anyway -- I always use the portal, and wait a few days before trying again. I asked SW if there's something wrong with my portal messages to nurse. She refused to answer. She suggested that I discuss my bad approach with my therapist. I said he encourages me to assert myself (true).

I explained that if I wait too long for the AFOs, they won't help me because I won't be walking any more, also clarified that I choke on my medicine. I said, "I said I appreciate that the entire health system in this country is in crisis, and I realize that the director has many people to care for, and she's not an octopus." She said, "No need to get sarcastic." (I thought the octopus expression was sympathetic....)

She wore me down with her negativity. I cried, became unintelligible due to voice symptoms when I cry. My spouse took over. He said she never did manage to say anything useful or helpful, always very vague, he never did figure out what she was actually saying.

Finally I asked her for an order for RIG through the portal which I can take anywhere. She said she'd talk to the director about that and I thanked her.
 
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Chapter two. The next day I got the following message from my primary:

I wanted to let you know that [director] reached out to me today to discuss your case. She recommended having you see a neuropsychologist to assess you for something called frontotemporal dementia caused by the ALS. I will send you a referral. She also recommend that we pursue having you see [other Center, twice as far away], as they have more providers within their practice and can hopefully expedite things for you if needed; there are probably more resources as well. We did discuss the PEG tube; she did recommend (and I agree with her) that you pursue getting it done at her facility as it will require a CT scan, Interventional Radiology consult, and then placement, especially if you want the more specific G-tube.

So, director wants me to conveniently go somewhere else, and wants to label me FTD to get me off her back. And she couldn't be bothered to communicate with me directly.
 
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Chapter three. Yesterday I got my third hepatic panel to make sure my body can handle the ALS meds, and sent the director my results.

Also yesterday miraculously I got scheduled for the darned CT scan -- 90 min away, supposed to get there at 8:30 am. They know how far away I am! I have left a message requesting a later time of day.

Today I get a message from director:

Dear M and [spouse],

Thank you for reaching out with your lab reports.

Hepatic function measure AST has increased from 35 to 81, or more than 2x the normal. The ALT has increased from 43 to 70, which is still within normal range.

I recommend you decrease the dose of Riluzole from 50 mg twice daily to 50 mg once daily. Please re-check hepatic function in 2 weeks. If it remains elevated, then we would need to discontinue Riluzole completely.

Kind regards,
[Director]


So, she's suddenly including my spouse because I supposedly have FTD. What she doesn't know is that my spouse always has his head in his next experiment or next paper. When he has to take over with the portals it will go seriously against his grain.
 
I am confused. The person telling you about riluzole is the prescriber ( or supervisor of prescriber)? Is not your neurologist prescribing and monitoring? Or is this neurology? FWIW I know my clinic allow lfts to increase to 5x normal before stopping. I am sure they check frequently once an elevation happens but they don’t stop it for numbers like that
 
Wow! MupStateNY...Wow! Does the clinic that is 2x as far away have telehealth?
Maybe Synapticure would be a good fit for you and your family.
I haven't had to use a portal with Synapticure. The RN case manager either emails me, zooms with us or calls me on the phone. Maybe this is early days for Synapticure, I don't know, but she seems to know who I am. Her follow up has been excellent.
 
We almost always went up to Emory the night before and stayed at a hotel. Emory had arrangements with the hotel for a discount. It was a Marriott Courtyard and it had a bistro inside it. A breakfast came with the room.
We would have had to fight Atlanta traffic otherwise.
 
Mary, glad to hear you're happy with Syn. My first appt will be Thurs!

Nikki, it's the ALS Center director who monitors my hepatic panel and prescribes the ALS meds.

The non-Center neurologists I've seen have told me the centers control the ALS meds. What do I know?
 
It makes sense for theALS neurologists to direct your ALS meds as long as you are under their care. so they are the ones who are ordering the neuropsych eval and the CT?
 
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