Question & 3/4 of a diagnosis

Status
Not open for further replies.

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Here’s the tldr;

- Diagnosed by general neurologist with “motor neuron disease”, with referral to specialty unit for final diagnosis.
- How do I talk to my parents about this?
- How do I get my husband to stop trying to get me into fringe cure therapies?

Here’s the background:

First, I’m humbled by how supportive and kind the members of this group are. Thank you for that and the wealth of information you provide.

I started tripping and falling ten months ago. I was otherwise a fairly healthy 50 yo woman. I don’t want to go too deeply into symptoms, but I will say that since onset I have become confined to a wheelchair, require a voice amplifier, and have trouble at mealtime and other basic lifestyle activities. So quite a lot in ten months’ time. Unfortunately, I’d been seeing a not-great neurologist and was getting nowhere until November, when I found a really good one.

On Thursday, my current (good) neurologist told me we’d ruled out all mimics and were looking at a motor neuron disease. She didn’t want to speak in terms of ALS specifically because she said the doctors at the motor neuron clinic would address that.

So here’s the thing. I’m in a good head space about the (almost) diagnosis. I’ve had months of sharp decline with no treatment and no answers, and realized I’m ok with any outcome. ...Except I do get emotional when it comes to friends and family.

I know I’m not supposed to say this, but: I do think this is ALS. And my parents will also read between the lines when I tell them it’s motor neuron. And “we don’t know for sure yet” isn’t going to be a comfort to them because my physical condition is already such a hot mess, and let’s face it, any of those other MND’s that I could squint my eyes at and believe are also a fit aren’t exactly glamorous, either.

So how do I talk to them and make this a somewhat safe conversation? The appointment was Thursday, so I should have called them by now. They’re in their seventies.

I already blew it with my husband. I thought he would be accepting and willing to wait it out like I was (it takes months to get in to the motor neuron unit—months of new symptoms and no treatment and more decline, I’m sure). Anyway, I was wrong. He did NOT take the MND news well, and I would do anything to ease his mind

Which brings the next question—about the husband. Now he’s a zealot about every fringe therapy there is. Cryotherapy, NAD+iV, hypobaric oxygen chamber. I don’t know if I spelled any of those correctly. Also some weird supplements. I don’t know, all of these things are probably perfectly fine. But I seriously doubt they cure ALS or they’d be in common use at all the ALS clinics.

If I truly am on my way out, and it’s not looking good for me, I worry that I’ll leave him in the poor house with all these nutty treatments stacking up. Dealing with any of the MND is expensive. I don’t know how to coax him away from these ideas.

Has anyone had either issue with loved ones? Thank you in advance for your help.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,176
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry you are dealing with this. You know your parents best but there is no easy way so honest and simple I think.

if your neurologist said that and you are that disabled surely she can get you an appointment sooner. There is actually a push in the ALS professional community to get people seen sooner for diagnosis. Can’t she call them for you?

there are a lot of alternate therapies and a lot of scams too. We all get people pushing something they read or heard but it is very hard when it is your spouse. Is this his normal or is it just for ALS?
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
The appointment with my neurologist was a bit overwhelming and I didn’t realize until after the fact that it was going to take months to get into the MN Unit. Now that you mention this, I don’t think she realized this either.
Part of the problem was that I needed a repeat EMG (my previous not-great neuro only did one leg), and a follow-up PFT, and the MN Unit appointment would come on the heels of those two diagnostics. The PFT in particular was very backlogged for scheduling— late April for PFT, which would likely mean May or June for MN Unit.
Now that you mention this, the obvious thing to do is to reach out to my neuro and see if I can just get in with the MN Unit without having to wait for diagnostics.

Per the husband question, this is definitely not in keeping with his personality. Usually we have the long-time married couple dance of negotiation and compromise. This experimental healing zealotry looks like panic mode.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,176
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Please call the neuro now and let her help you get seen in reasonable time frame.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,014
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry you are dealing with so many things at once.
As a past CALS, I can confirm that the shock of the diagnosis (and you have enough diagnosis to know it is MND of some variant) is just huge. It takes 1 - 2 months to just kind of find your feet.
Everyone reacts differently, and I can see your hubby is in panic (understandable but not helpful).
I just feel that for all sides of things, if you can get these important appointments fast tracked at all it is going to help you deal with all the family discussions too.
I hope you can find the way through the conversations of how it would be great if he investigates ways to help you - maybe suggest he also checks the mainstream things that help like calories, not overdoing things etc. If he can move his energy into these areas he will probably help you a lot.
Have you been put on Riluzole or Radicava at all?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,748
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm sorry to hear about your preliminary diagnosis. I take it you will be seen at Methodist or Baylor?

The only way to deal with panic mode is to be calm yourself, and you seem to fit the bill. All the things you mentioned are scams, but, as Tillie mentions, the right bed, diet, feeding tube if needed, BiPAP, wheelchair accessories, etc. and a few judicious supplements can affect both quality and quantity of life. So I agree that if your husband's energy can be redirected, that can be good for both of you.

As Nikki says, I would be simple and direct with your parents. They will be more upset if things are obscure, or if they think you are concealing information. They have wanted to be there for you for this long, and they will want to be there for you still.

Welcome.

Best,
Laurie
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Thanks, Nikki, I will do that. I don’t believe any of us are thinking clearly right now.

Affected, I agree that getting his energy channeled into more conventional areas would be better. My sister somehow helped me put on five pounds though I’ve had no appetite. I’m not on either of those meds you mention. The way my neuro described it, I need these two more repeat diagnostics in order for insurance to cover the treatment. I need a repeat EMG because the first was inadequate, and a repeat PFT to show progression over time.

Thank you so much for your help
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,176
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I would double check on riluzole. You won’t get radicava without a solid diagnosis but these days riluzole doesn’t usually require prior authorization at least around here. You can probably look it up on your insurance site and be able to tell your neuro if you want to try it.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,147
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I'm sorry you're going through all this on top of the diagnosis. There are so many scams out there. If your husband insists on researching, have him look into power wheelchairs and even go on the caregivers Facebook group.

Just don't fall for the scams that cost thousands of dollars. If it sounds too good to be true, it probably is. My ex-husband is a conspiracy theorist. About once a month he emails me some crap and this month it was a way to help me survive ALS. It was getting all the WIFI removed from my home AND the microwave. He sent YouTube videos and cited a PALS who was cured. I did some research and found she died in 2018.

I lived alone with no family at the time I was diagnosed. I decided early on that I would take good care of my general health so I went organic (not a big change since I was already pretty much there) and gave up some food that bothered my stomach. I had vitamin and mineral testing, along with a ton of blood work and corrected deficiencies. Then I researched what supplements MIGHT be helpful. I came up with a very long list and, through more research, I narrowed it down to what was right for me.

There are a few Facebook groups, one for PALS only and another for women only. They might be worth a look.

Have him go on the ALSTDI forum if he wants to research supplements. Get him involved in things you might need in the future.

So sorry to have to welcome you here. Push hard to get seen by a neuromuscular specialist ASAP.

Only you know how to deal with your parents. I'm thinking gentle, but honest might work.
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Please bear with me if I’m doing these replies wrong. My intention is to reply to Laurie here (Igelb.) I’m so grateful for your help. Not used to the format.

Laurie, you’re right, I’m getting assistance from Baylor. My doctor there is so sharp and attentive. As I move forward, and if it is indeed an ALS diagnosis, I think I would qualify for VA benefits, as I served during the first Gulf War back in the 90s. (From what I read here, it’s best to get a second opinion, so maybe I get that through the VA?)

I have mixed feelings about the machines. My neuro suggested I use that Bipap thing now because I sound like a Sleestak when I talk. I gasp a lot. But I’m not wanting to drag things out as far as lifespan. Yes on feeding tubes when it gets to that because it’ll make things easier on the caregivers. But I’m afraid of any breathing assistance. I’m afraid my husband will push for any scrap of quantity of life out of me, no matter how wretched, which is why I want to draw the line early at any type of breathing machine, even non-invasive.

Maybe I’m thinking too far ahead. Again, I think we’re in panic mode. Sorry to hurl it all out there.
 

TippiLeigh

Active member
Forum Supporter
Joined
Jun 13, 2020
Messages
84
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
I lost my mother a few years ago, but my dad, who turns 80 this year, is having a very difficult time with this. I'm still in a bit of a limbo point of my own diagnosis. Currently my working diagnosis is PLS (Primary Lateral Sclerosis, upper motor neurons only affected), but they won't give me that as a definite diagnosis for probably another year because they want to wait about 4 years to make sure it doesn't resolve itself or that it doesn't progress to ALS.

Anyway, this is torture for my father. He can't stand to see me in person because he breaks down seeing how much my physical abilities have declined and his fear that I could go before him. The pandemic has in some ways made this easier because I've only seen him about 3 times in the last year and I'm able to hide away at home. I'm very selective with what I tell him. I mostly give him bare minimum info because it's all he can handle. For him, until I have an absolute, set in stone diagnosis and prognosis, I try and keep my health conversations with him light and positive. I ask for help when I need it and I know he likes to feel useful because that gives him something to do rather than something to think about. This could totally be the wrong approach, but it's what works for our relationship. And to add a little bit of context, he's already lost 3 adult children. I've lost a brother to cancer, a sister that was murdered, and another brother who recently died from COVID. And my mother died from alzheimer's a few years ago. So his anxiety about losing another child is through the roof.

My husband is a physician, so while he doesn't go down the alternative medicine rabbit hole, he is still in a lot of denial. I can tell when I talk about MND, he gets all flustered and says maybe we can still find something else. He's very supportive with the disability aspect of things, i.e. helping me to things, working on making changes to our house to make it more accessible, etc., but he still doesn't like to say it out loud. I have a good friend that lets me vent away to her and I utilize her as much as she'll allow.

With all that said, I think all you can do is share what you feel comfortable sharing and when people offer to help, let them. Wishing you all the best. It's hard navigating all this with the people that love you the most.
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Nkki J,
That’s good to know about Riz! Maybe that could tap the breaks, at least.

I’m loathe to mention specific symptoms because I get that a lot of people come to this forum with ALS anxieties (believing they have ALS based on minimal symptoms) or even mental illness.

It would just be nice to preserve quality of life.
 
Last edited:

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Thank you, Kim T. Can’t imagine living with this disease in this day and age with no microwave or wi-fi!
I do have a power wheelchair now, but could probably benefit from a good community like the one you mentioned.
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
TippiLeigh,
Oh, your father. That’s the thing. Your father has already lost so much, (your three siblings! I’m so sorry!) and you’re downplaying your situation. I get it. He’s an 80 year-old man who has out-lived almost his entire family. My heart goes out to you.
As others have said, I need to have an honest and simple conversation with my parents.
Thank you so much.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,014
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I personally think that bipap is as much about quality of life as quantity.
CO2 buildup is really not pleasant. Neither is not getting enough calories, or having serious choking episodes. None of those things are nice for you, and they are awful for your loved ones to watch. I think you almost have more control of things if you have breathing and feeding assistance.
So, as you get your own head around what is going on, I hope you find that balance of giving yourself as much quality as possible, regardless of whether it ends up giving you longer life. We will support you whatever decisions you make, but we will also try to help you make informed decisions. You are doing just fine answering - starting with @IslandL8dy or the name in the signature or whatever is all fine. We usually work most of it out 😊

Now I'm not certain of the image on your T Shirt but it strikes me as maybe something we say here - it's more dignified to be in a wheelchair than face planting?
 
Status
Not open for further replies.
Top