IslandL8dy
Member
- 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.
- 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.