Rapid Progression?

[KarstBoy]

My 65 yo wife has bulbar onset diagnosed in April 2021. In early May 2021she had a lung/diaphragm evaluation done that showed normal numbers (mid 90's). Last week (later 1/2 of August 2021) her lung & diaphragm numbers were at 60% & 57% respectively. To say we were shocked is an understatement.

Her speech has also deteriorated very rapidly in the last month. In another month, I suspect she'll be totally incoherent.

Her right arm is pretty much completely paralyzed and her right leg & foot is fading fast to the point that she has tripped and fallen several times within the last month despite the precautions we've taken.

Neck muscles are rapidly weakening causing here neck to droop. This of course has been making her neck hurt.

Is this unusually rapid progression?

 

[lgelb]

I'm sorry to hear that things are moving fast. Apart from the rate of progression, fall prevention is really important -- does she have a walker? Does she need a wheelchair? Maybe start working on a power chair since that will take time.

Breathing numbers don't always reflect the clinical picture, but it does sound like a BiPAP should be in the works. Still, even the numbers often level off for a time. You can only deal with what's in front of you.

Likewise, sounds like time to think about apps for her laptop, tablet or phone, and head or eye control of at least one device. Let us know if you need help with any of this.

With bulbar onset, as you know, speech and breathing are generally affected more severely earlier in the disease. Not knowing how long the diagnosis process was, her course does sound pretty fast overall, and that is more often the case with bulbar onset. There is still the possibility that she will have a plateau "in the middle."

Best,
Laurie

 

[KarstBoy]

-- does she have a walker? Does she need a wheelchair? Maybe start working on a power chair since that will take time.

No walker because she has only one good arm.

We do have a manual wheelchair that I have been pushing her around in since we received it a few weeks ago. Got it just in time because it got to where she was getting easily exhausted walking even short distances.

Power wheelchair was ordered through the VA and it came in today. Because no van yet, they will deliver to our house.

a BiPAP should be in the works.

We were told by the pulmonology folks last week that a bipap was needed. Sleep study scheduled in a couple of weeks.

Likewise, sounds like time to think about apps for her laptop, tablet or phone, and head or eye control of at least one device.

Two days ago a speech assist device was delivered. It's going to take plenty of practice but we got it in the nick of time. Like I mentioned in my original post, she's very close to not being able to verbally communicate.

Let us know if you need help with any of this.

Thanks!

There is still the possibility that she will have a plateau "in the middle."

We're certainly hoping for that!

 

[KarstBoy]

One thing I didn't mention was eating. It's only been 4 1/2 months since diagnosis and she is already having to thicken any liquids she takes in and has had to cut out many foods she used to eat. She started having smoothies once a day last week.

Three weeks ago, she also made the decision to quite driving a car. As hard a decision as that must have been for her, I'm really glad (and proud) she made it. I have been bringing the topic up for a while... never pushing or demanding, but putting it out there as food for thought. I wanted her to have her independence for as long as possible but also knew there would come a time when it would be flat out unsafe for her to drive. That tough decision is behind us now.

The speed with which the disease is progressing has us both stunned.

 

[lgelb]

I am glad she made that wise choice on her own.

There are a lot of nutritious ingredients that can be mixed into smoothies with a powerful blender, like eggs, nut butters, "Naked" protein powder, juices, soft fruit without seeds, coconut oil/flour, and so on. Keeping weight up is important, and I'm sure you're looking into a feeding tube as well.

I know this is a lot. Pipe up any time -- no question is too large or small.

 

[Miss]

Please let me know if I can help you with pushing things through the VA. I've gotten quite good at it.