Finding easy fun things to do

[Tomswife]

My husband Tom has bulbar onset ALS, with symptoms since march 2022. Since he is declining but still able to walk we are finding small, easy things to do. Since September We visited his brother in Virginia for a few days, we are in NJ. We had to cancel our Viking cruises, but we went on the Circle Line around Manhattan. We went antiquing. We went for a drive north along the Hudson River to see the fall foliage. We visited the Thomas Edison historic Site in a nearby town. We went to the National Canal Museum in Easton, Pa. and rode the canal boat with mules pulling. Tomorrow we head to Durham NC to see family and then to Marco Island. I will be doing all the driving, so we will have lots of hotel stops down and back.

I am realizing I dont know how much longer he will be able to walk. But I will keep trying to find interesting things for hubbie until he cant do it.

 

[Mary2]

Wow! You and your husband Tom have done some interesting things. I am glad you enjoyed them and hope you have a good time in Durham and on Marco Island! When my husband was as the scooter stage (the scooter is rather heavy to put together) we attended several college hockey games with my son in Athens GA and we also got to Hilton Head! These are good memories!

 

[lgelb]

When Tom begins using a wheelchair, likely he will still have plenty of life left and just as you see people at all kinds of destinations with canes, walkers, and scooters, you can usually get a wheelchair into all those same places, though of course you need transit or a wheelchair-adapted vehicle to get there.

Some people wait too long because the wheelchair seems scary, but a few months of denial is never worth the potential consequences.

 

[Tomswife]

Yes. I am more concerned about my own ability getting him in and out of wheelchair and about. I am 70 and have arthritis etc.

 

[Nikki J]

As far as once he is in the chair if it is a power chair as it should be you should have no issues as you won’t have to push him. A patient lift ( hoyer or similar) should make transfers ok too. You should definitely get a powered lift if you have arthritis. Insurance probably won’t cover but you might get one from a loan closet or second hand. Maybe a grant to help but if all else fails pay for it. Manual lifts are doable you should conserve your energy talk to your clinic about when to start the pwc process. It takes a while to get one after it is ordered

 

[Tomswife]

So...we needed to improvise. We were headed to Florida from Durham, but there is no swimming in the gulf. Getting wet with any gulf water, even walking, is not advised. Tom would be stuck in room or at pool.
We decided not to continue to Durham. We headed north and are in Appomattox, Virginia to visit the Civil War Site. Then we will stay 2 days in Richmond and visit the Virginia Museum of Art, where they do have wheelchairs.
After Richmond we are not sure of next stop. We are thinking of a few days in Cape May.
Its a ramble and its all about Tom and what he will enjoy.

 

[Mary2]

I have been to Cape May and enjoyed seeing the Victorian Houses. Too bad about the Florida beaches.

 

[Tomswife]

We are in Richmond, Va. Today we went to the Virginia Museum of Art. They have a wonderful and diverse collection. We used the loaner wheelchair. This was my very first time pushing my husband in a wheelchair. As we went into each gallery I read the plaques to him, so he could remain facing the art. He really enjoyed the museum. I will admit i did get a bit tired after a few hours. It was a day I will remember always. I wanted to care for him in a loving way, and I was able to do it.
We will look back on this time as the easy days with ALS. Sometime in November Tom will get the feeding tube. He gets tired. We are ending our ramble north and will head directly home to NJ tomorrow.

 

[affected]

Have you started the process to get a powered chair?
You both won't believe the freedom it gives.
I love the museum story, great memory building.

 

[Mary2]

Yes, we used a manual wheel chair for my husband to attend my son's college graduation in 2018. After a couple of hours of pushing him around the campus, I was drenched in sweat.

 

[Tomswife]

I am waiting for clinic PT person to call me about wheelchairs. I heard you need a special van and i would not be able to lift it.

 

[Nikki J]

You do need a van if driving yourself and virtually no one can lift a power chair. They are very heavy. However you might be able to find paratransit services. My friend in NJ has them in their area. Of course having your own van is nice. If you travel some more you can probably rent a power chair at a touristy destination. We rented mobility devices twice in Florida. The first time a scooter the second time a power chair though that company only rented power chairs if you had one at home. They delivered and picked up

 

[affected]

Our Steve here is able to get on buses in his PWC too, so there could be lots of options as well as the van.
It is true, no one can lift a chair, they are super heavy, but you can't manage for long with a manual chair either.
The process to get a chair and transport can take many months, so starting now will be well worth it.
In the meantime, we love to hear of any adventures and fun you have!

 

[lgelb]

As Tillie notes, if you live in an area with decent public transit (I don't know much about NJT in Livingston, but it certainly covers a lot of the state and of course takes you into NYC or to Philly via SEPTA transfer in Trenton) you can take regular transit, not depend on paratransit or need a van. Buses have lifts or lowering entrances, and many trains are flush platforms. Even the Monorail here, launched in 1962, has a manual ramp they will promptly bring out for power chairs.

 

[Nikki J]

I don’t know about your system but should your area be as Laurie describes you may be able to get someone to accompany you for the first trip so you can see how it works. The MBTA ( Boston area transit) has this which I think is great as that first trip can be intimidating. Delve into the accessibility section of the website and if there isn’t anything obvious ask