New to ALS and this forum

Status
Not open for further replies.

lindyazmn

New member
Forum Supporter
Joined
Dec 6, 2020
Messages
6
Reason
CALS
Diagnosis
05/2020
Country
US
State
AZ
City
Tucson
Hello everyone. I just found this forum and it's a relief to see so many of you out there. But I am sorry there are so many of us out there.

My husband was diagnosed with ALS in May, 2020 at age 61. He ran a marathon in October, 2019 and another in December, 2019. Watching the steady march of this horrific disease is devastating. And I know you all know of what I speak. We work hard to live in the moment and find joy in simple pleasures every single day. And there is a lot to be grateful for. AND I also feel overwhelmed under the crush of grief and physical strain, as I am also continuing to work my paid job. We are currently in Tucson and have begun care with Dr. Ladha at Barrow Neurological Institute in Phoenix. Dr. Ladha and his team are outstanding. The local ALS Association chapter is amazing, too.

I am trying to stay ahead of everything so we aren't always reacting to crises, especially since it appears that we are not among the people whose disease progresses slowly. He takes Riluzole and Baclofen. We're waiting to find an infusion center nearby for Radicava. My husband has had several terrible falls and uses a walker now. His speech, swallowing, and mobility are all severely affected. He has done the voice bank and we have an iPad with stylus to use as a boogie board (is this the right term?), I'm making smoothies and cooking softer foods, we have ramps in/out of the house, and will have the ADA accessible bathroom done this week. But I am lifting him in and out of chairs, helping him in and out of bed, helping him roll over in bed. We have a Prius, which is a mobility nightmare. He's tall and lean (runner's body), and I have strained my back, shoulders, right arm, and hips with all the lifting and moving.

Thank you for letting me tell you all this. But also, as the people who are living this now, can you please tell me what I need to know? What's your best advice? What equipment do you consider essential? How do you even begin to find household assistance? And especially, with the very real, life-threatening threat of Covid-19. What are your go-to recipes for smoothies or meals that provide good nutrition, taste good, and help keep your PALS' weight up? How do you stay upbeat and cheerful while you are watching your beloved be ravaged by ALS?

Thank you.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,886
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Lindyazmn, I'm one who doesn't find saying "Welcome" to the Forum
following a diagnosis of ALS easy. Rather "Glad you found us."

Nothing against those who say "Welcome."

Thank you for telling us you and your husbands path to diagnosis...

"We are currently in Tucson and have begun care with Dr. Ladha at
Barrow Neurological Institute in Phoenix. Dr. Ladha and his team are
outstanding. The local ALS Association chapter is amazing, too."

We have extremely ALS knowledgeable members and Moderators.
The more info they have the better they can help you.

Stay tuned and tell us more as things go along.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,414
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
As Al says, sorry you have had to join our ranks, Lindy.

My first advice is, get a Hoyer lift (that's a generic term, not just a brand) and a hospital bed if you don't have one. Medicare covers only a manual (non-powered) lift but you need a powered one. Your local ALSA chapter may have a loaner., but they are also available for cash on line at sites such as SpinLife. The chapter may also have resources to speed up the hospital bed process, which does require a doctor's order.

We have a number of threads about soft food/smoothies/high-speed blending [the search link is top right] but if his swallowing ultimately isn't going to support those, it may be time to discuss a feeding tube placement.

If he seems unsteady even with the walker, it would be time to get the power wheelchair process started at clinic, since it doesn't happen overnight.

In that scenario, a Prius will have to give way to a wheelchair-accessible van, unless you are able to use public transportation or require less frequent driving-length trips (vans can also be rented by the day), so that might be a process to start thinking about also.

"Steady march" is the right phrase, unfortunately. It is a lot to take in. So I'll just raise one other thing for now -- how is his breathing? When it needs support, he will need a BiPAP.

We're here whenever you need us.

Best,
Laurie
 

lindyazmn

New member
Forum Supporter
Joined
Dec 6, 2020
Messages
6
Reason
CALS
Diagnosis
05/2020
Country
US
State
AZ
City
Tucson
Thank you Laurie and Al!

Yes, it is all very overwhelming. We lived in Minneapolis, MN until moving to Tucson in October. My husband received the first preliminary diagnosis in April at Noran Clinic and then a second opinion/confirmation in May from Dr. Manousakis at the U of MN (because of Covid, I was not allowed in the building and sat in the parking lot and listened to the diagnosis over speaker phone...). We thought we might just be in Tucson for the winter, to escape snow and ice, but honestly, I don't think my husband will ever be able to leave AZ. It's just moving so fast. Transitioning care to Barrow Neurological is great, but I feel like we lost some ground between the baselines in MN and establishing the more recent "baselines" in AZ. I'm still catching my breath and on a crash course with all the medical terms and testing numbers. Between May and August, I know he went from 80% to 72% breathing capacity. I'm sure it's way lower now.

So thank you for the advice. This is exactly what I was hoping to find out. I figured we needed the Hoyer lift, hospital bed, and power wheelchair at some point. But I think I've naively been hoping for one of those plateaus. And also naively thinking that "if I just XYZ [figure out the right food or grip his arm more tightly, or etc., etc.], then everything will be ok"... While I love the Prius's gas mileage, the effort required to get out the door and in the car is daunting. I'm not sure if it's worth buying an accessible van if we'd only need it for months rather than years, so I'm glad to know it's possible to rent a van. And better to have a feeding tube than aspirating food. So I appreciate the reality check and straight talk.

A year ago when my husband completed the Rocket City marathon on an excellent pace, if you'd told me I'd be watching him deteriorate before my eyes less than a year later, I wouldn't have believed it.

Thanks again. Lindy
 

cbiedron

Member
Forum Supporter
Joined
Apr 10, 2020
Messages
14
Reason
Lost a loved one
Diagnosis
04/2020
Country
US
State
NJ
City
Bedminster
Hi Lindy, I’m so sorry for what you are going through. I made smoothies for my husband before he got his feeding tube with a very high calorie protein powder and added healthy organic things like almond butter, coconut oil, kale, pomegranate juice, frozen blueberries, Greek yogurt, sometimes cooked scrambled eggs.
I purchased an inexpensive wheelchair to keep in the house to get him from place to place while I could still help him transfer. I also worked full time (from home b/c of covid) and hired a home health aide from an agency to come in for a few hours in the morning while I worked.
There are many wonderful people here who helped me. The folks at the ALS clinic where I live were helpful too.
Lean on any friends or family who offer to help you take care of you. Sending hugs.
 

nona

Distinguished member
Forum Supporter
Joined
Oct 1, 2018
Messages
469
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
Lindy, I am sorry for what you are going through. It sure is strange. I ran a personal best 5k three days before seeing my pcp for slurred speech. In hindsight I was whistling through my nose while running and that was strange too.

I lived in Tucson for years 2-3. I recommend checking out the used wheelchair accessible vans at the AZ Mobility Center in Phoenix. I got my Toyota Siena there and I still have it. High mileage and a garish color but a good price.

I've heard good things about the Barrow.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
184
Reason
Lost a loved one
Diagnosis
1/2015
Country
US
State
TX
City
Houston
I second Laurie’s advice to get a power lift. Don’t strain your back, I also was injured trying to transfer my pals.

also, ask you Neuro about nuedexta, there is anecdotal evidence it helps with speech and swallowing. My pals and I be believe it helped him. It also helps with the occasional crying/laughing outburst that can happen.

sorry you have to join us, but you will find good practical advice here.
 

nona

Distinguished member
Forum Supporter
Joined
Oct 1, 2018
Messages
469
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
I second the nuedexta recommendation!
 
Status
Not open for further replies.
Top