Husband caregiver newly diagnosed

[Chincoteaguer]

Hello. My wife was diagnosed with ALS 12-20-17 after months of symptoms. She has been through so much in the last two years that the symptoms were overlooked by her doctors. She had surgery for breast cancer 01-2016; heavy chemo for 18 weeks; 33 radiation treatments; broken pelvis from fall 01-2017, drop foot neurophy diagnosed mid-summer. Her neurologist has agreed that we should seek a second opinion. We have an appointment at the Mayo Clinic for 01-30-2018 - sooner if there is a cancellation.

This is my first post to the ALS forum and hope to gain insites from all you brave and caring folks.

One of many questions is: should we drive to Wisconsin (from Virginia, 18 hours) or should we fly - Norfolk to Chicago to Rochester, Minnesota. I'm concerned that changing flights, etc. will be hard for her. Costs are not a consideration.

Thank you in advance for any thoughts.

 

[lgelb]

Welcome, and very sorry that you find yourself here.

Without knowing more about her abilities, your driving vs. flying question is hard to answer, but airports do offer wheelchair transportation between terminals and onto the plane. An 18-hour drive is a lot, even assuming you break it into multiple nights -- you will have getting in and out of the hotel, packing/unpacking, setting things up, etc.

Have you also considered going somewhere closer for the second opinion, such as Hopkins, Duke, such that your second opinion clinic could also be a future regional resource? Just a thought.

Best,
Laurie

 

[Chincoteaguer]

Thanks. Yes we have considered Johns Hopkins, Medical College of Virginia, Duke, N.C. Etc. but would have to wait until April for appointment. Was really surprised to learn that the highest rated (Mayo) could get us in as soon as January. We are told that we should get into a treatment regimen soonest but this would require a diagnosis with specifics.

Also, neighbor who travels frequently to Minneapolis says driving is not a good idea. Winter weather is really bad in January and could mean stranded on the highway.

 

[Lkaibel]

Agree on winter weather! I live in Minneapolis. Fly, it’s the ay to go in the winter particularly.

 

[Chincoteaguer]

Thank you both for your input. I hope I can convince my wife to fly. I don't want to upset her by insisting but it might come to that.

We just finished trimming our Christmas tree and eating the Christmas Eve goodies.

Fortunately, my wife can still eat regular foods and gets around with a walker but she is loosing her ability to speak and sometimes gets choked on food.

 

[Larrytbm]

Fly, don't drive. In either case, plan on an extra day in case of delays so you don't miss the appointment. And if everything goes on schedule, then she will have an extra day of rest.

On a separate note, it is probably not a good idea for her to put off getting a feeding tube. Choking on food is risky with weak throat muscles, not just the choking but food and liquids in the lungs causing pneumonia. Course, you need a Dr. order to get the feeding tube.

My wife was diagnosed in May and has been on a feeding tube for months, but still enjoyed ice cream and a few other things, til she ended up in the hospital with pneumonia. Also took her pills using apple sauce, now all meds are via the tube.

Anyway, there are lots of changes that should be made in advance of becoming mandatory. Like a PWC so she can save her energy and use the walker at the best times. Handicapped bathroom, breathing machine, wheelchair ramps, lift chair, etc. It took me 6 weeks to install a roll in shower, don't absolutely need it yet, but it takes less energy for her to shower right now.

My wife also had health issues, including several falls, for a year prior to her diagnosis. In hindsight, they were most likely due to ALS. But instead, we thought the other problems were caused by the falls.

 

[Chincoteaguer]

Thanks for the info Larry. We have handicap doors to the bedroom and bath room (wife insisted when we built house 18 yrs ago) and we have a non-tub shower but it has a lip.

Feeding tube would be a shocker for wife. We understand importance of tube since caring for my mother-in-law several years ago. Hoping to wait on most of these decisions until after Mayo visit in January anticipating treatment recommendations from Clinic that would help convince wife.

Are you the sole care giver? Is family close by? Do you employ caregivers? Are baths a big problem for your wife?

 

[DetroitLakesMN]

I just got my ALS Diagnosis at Mayo Clinic in Rochester, Minnesota four weeks ago the day before Thanksgiving.

I did a walk-in.

I am 72 years old.

I recommend you fly to Rochester, Minnesota Airport immediately and do a walk in Tuesday morning December 26th three days from now. They will work you in right away Tuesday or Wednesday morning as you wait in the waiting room for an opening or cancellation each day I promise you.

I have treated at Mayo Clinic for forty years I know how it works.

Walk-ins like this are common and they are set up for them in several different ways.

You will not be intruding and they will welcome you and you will get in.

 

[Larrytbm]

Thanks for the info Larry. We have handicap doors to the bedroom and bath room (wife insisted when we built house 18 yrs ago) and we have a non-tub shower but it has a lip.

Feeding tube would be a shocker for wife. We understand importance of tube since caring for my mother-in-law several years ago. Hoping to wait on most of these decisions until after Mayo visit in January anticipating treatment recommendations from Clinic that would help convince wife.

Are you the sole care giver? Is family close by? Do you employ caregivers? Are baths a big problem for your wife?

For all the changes, it is better to think about them and discuss them in advance, helps with the transition. But certainly you need the clinic visit first.

I am the sole caregiver at this time and want to extend it that way as long as possible. Hence, the flush floor shower with multiple grab bars and a folding one at the toilet. The shower head is both adjustable height and hand held and with a shower chair, she is independent. 12 months with no falls, but quickly approaching the need for a lift chair, transfer lift, neck support and eye gaze supported speech. Just my judgement, but falls and other illnesses are worse than making early transitions.

 

[Chincoteaguer]

Supported speech? This sounds great! Would be a great help. Can you explain?

Wife is able to use the shower and the commode. I installed two grab bars in the powder room (door is not handicap assessable like master bath) and she is able to pull herself up. She uses recliner now but thinking about a lift chair. Will check on medicare funding for same but hope someone on this forum can advise.

I hope you know how much your input means to us.

Thank you

 

[Larrytbm]

Supported speech? This sounds great! Would be a great help. Can you explain?

A Tobii eye tracker computer for speech generation. Actually read this topic.

https://www.alsforums.com/forum/people-als-pals/40256-windows-eye-control.html

I just received the 4C last week and got my wife's laptop upgraded to the new version of Windows. I'm just starting to get it working, then get it setup for her.

 

[Chincoteaguer]

Thanks Larry, We had heard of thr eye control and based on your description will be pursuing soon.

 

[Chincoteaguer]

I just got my ALS Diagnosis at Mayo Clinic in Rochester, Minnesota four weeks ago the day before Thanksgiving.

I did a walk-in.

I am 72 years old.

I recommend you fly to Rochester, Minnesota Airport immediately and do a walk in Tuesday morning December 26th three days from now. They will work you in right away Tuesday or Wednesday morning as you wait in the waiting room for an opening or cancellation each day I promise you.

I have treated at Mayo Clinic for forty years I know how it works.

Walk-ins like this are common and they are set up for them in several different ways.

You will not be intruding and they will welcome you and you will get in.

This is great news. I will pursue soonest. When I call tomorrow would the appointment person be willing to say the same thing?

 

[DetroitLakesMN]

Yes absolutely.. and wishing you and yours the very best..

Thank you

 

[DetroitLakesMN]

Yes absolutely.. and wishing you and yours the very best..

Thank you

The Kahler Grand Hotel in Downtown Rochester, Minnesota is connected to the Mayo Clinic and the best place to stay and reasonably priced to go with it.