Peripheral neuropathy (lack of feeling in feet/legs). Any tips?

[shipgeeks]

After 18 months (and six cruises) of "Why I am so clumsy?" and "I can't really feel my feet", I have a diagnosis of peripheral neuropathy.  Getting PT for balance and strength, as well as care of neurologist and rheumatologist.  Seeking to receive and share any tips, especially for on the ship.

At home, shopping, and PT, I can usually wear sneakers, although my PT nixed my newest pair, as the soles are thick and stiff, without much flex at the ball of the foot.  So they are on hold.  Yesterday I wore a pair of loafers I had planned to pack....but discovered that they can slip off without my knowing it.  Another on hold.

I will take a cane on the cruise.  I don't use it around the house, but take it for the entrance and lobby of PT facility, just for reassurance. I got some nice tips from my post here re novice cane user.

Balance is my biggest concern, though I have always dealt pretty well with rough seas. 

Not too concerned with going ashore, as our primary bliss is just being on a ship.

Anyone else dealing with this?

 

[ChuckL]

On 9/10/2023 at 3:27 PM, shipgeeks said:

After 18 months (and six cruises) of "Why I am so clumsy?" and "I can't really feel my feet", I have a diagnosis of peripheral neuropathy.  Getting PT for balance and strength, as well as care of neurologist and rheumatologist.  Seeking to receive and share any tips, especially for on the ship.

At home, shopping, and PT, I can usually wear sneakers, although my PT nixed my newest pair, as the soles are thick and stiff, without much flex at the ball of the foot.  So they are on hold.  Yesterday I wore a pair of loafers I had planned to pack....but discovered that they can slip off without my knowing it.  Another on hold.

I will take a cane on the cruise.  I don't use it around the house, but take it for the entrance and lobby of PT facility, just for reassurance. I got some nice tips from my post here re novice cane user.

Balance is my biggest concern, though I have always dealt pretty well with rough seas. 

Not too concerned with going ashore, as our primary bliss is just being on a ship.

Anyone else dealing with this?

 

I also have peripheral neuropathy, along with spinal and cervical stenosis, and severe arthritis in the knee, which can cause it to give out. I am in physical therapy twice a week, and also have regular appointments with my physical medicine doctor and two other specialists at my physical rehab center. I regularly use a cane for both the balance issue and security for not falling if my knee gives out, or my back has excruciating pain.  On my past few cruises, I have rented a power chair for even more  added security when traversing longer distances on the ship and also having to potentially deal with rough seas.Having the added security from the chair has really made a huge difference in my being able to fully enjoy my cruise without the fear of falling and injuring myself.The cost has generally been around $400 for a seven day North American cruise. Scooters are a bit less expensive, but I prefer the power chair because it has a much tighter turning radius and makes maneuvering in and out of elevators much easier for me. Also, if you are in a port that doesn’t require tendering, and is accessibility friendly, you can also take your mobility assistance transport device off of the ship. 

[lenquixote66]

On 9/10/2023 at 3:27 PM, shipgeeks said:

After 18 months (and six cruises) of "Why I am so clumsy?" and "I can't really feel my feet", I have a diagnosis of peripheral neuropathy.  Getting PT for balance and strength, as well as care of neurologist and rheumatologist.  Seeking to receive and share any tips, especially for on the ship.

At home, shopping, and PT, I can usually wear sneakers, although my PT nixed my newest pair, as the soles are thick and stiff, without much flex at the ball of the foot.  So they are on hold.  Yesterday I wore a pair of loafers I had planned to pack....but discovered that they can slip off without my knowing it.  Another on hold.

I will take a cane on the cruise.  I don't use it around the house, but take it for the entrance and lobby of PT facility, just for reassurance. I got some nice tips from my post here re novice cane user.

Balance is my biggest concern, though I have always dealt pretty well with rough seas. 

Not too concerned with going ashore, as our primary bliss is just being on a ship.

Anyone else dealing with this?

 

Yes,due to the neuropathy I often find myself unable to walk because both feet tend to get numb at the same time.I have not been on a cruise since December 2019 because on that cruise I spent the majority of time in the cabin .

[lenquixote66]

On 9/16/2023 at 7:16 PM, ChuckL said:

I also have peripheral neuropathy, along with spinal and cervical stenosis, and severe arthritis in the knee, which can cause it to give out. I am in physical therapy twice a week, and also have regular appointments with my physical medicine doctor and two other specialists at my physical rehab center. I regularly use a cane for both the balance issue and security for not falling if my knee gives out, or my back has excruciating pain.  On my past few cruises, I have rented a power chair for even more  added security when traversing longer distances on the ship and also having to potentially deal with rough seas.Having the added security from the chair has really made a huge difference in my being able to fully enjoy my cruise without the fear of falling and injuring myself.The cost has generally been around $400 for a seven day North American cruise. Scooters are a bit less expensive, but I prefer the power chair because it has a much tighter turning radius and makes maneuvering in and out of elevators much easier for me. Also, if you are in a port that doesn’t require tendering, and is accessibility friendly, you can also take your mobility assistance transport device off of the ship. 

I too have spinal stenosis in addition to neuropathy.I have in home PT twice a week.I have not tried a power chair on a cruise.That is something to think about.

[ChuckL]

10 minutes ago, lenquixote66 said:

I too have spinal stenosis in addition to neuropathy.I have in home PT twice a week.I have not tried a power chair on a cruise.That is something to think about.

Just make sure that you get the dimensions, particularly the width, of whichever device you rent. Depending on the company you use and what you are renting, you may need to stay in sn  Accessible Cabin to be able to fget it through the doorway, because you are not allowed to leave it in the hall as it's  a safety hazard to the other passengers. lThe cruise line Specisl Needs department should be ablr to get you the door dimensions for your ship.  

[Slugsta]

I absolutely love my powerchair! I am able to walk short distances without, but the chair allows me to get from one end of the ship to another and still be able to enjoy myself when I get there. When I first got it, I was determined to not use it until I absolutely had to, but now I know that I am better using it right from the start so that I can conserve my energy.

 

An added advantage is that I am more stable than other people if the sea is at all rough 🙂

[dappledumpling]

My wife 10 years ago got diagnosed with Peripheral neuropathy post chemotherapy. Like you she is good for a short time on her feet .  We started with a transfer chair then progressed to a regular wheelchair  and now she has a powerchair.  Apparently i like to drink and run into walls when pushing her. The power chair has been a great investment in our lives..  The mall,, seaworld,  disney and countless cruises have been tackled with this device. A regular room worked fine until we got the powerchair then an accessible room became needed..  Bonus showers have had seats in the accessible staterooms we have had.

 

Tender ports can be a challenge and we generally stay on board. Folding wheelchairs are much easier on excursions.. 

 

Hope that helps a little

[Valen9]

On 9/18/2023 at 12:19 PM, ChuckL said:

Just make sure that you get the dimensions, particularly the width, of whichever device you rent. Depending on the company you use and what you are renting, you may need to stay in sn  Accessible Cabin to be able to fget it through the doorway, because you are not allowed to leave it in the hall as it's  a safety hazard to the other passengers. lThe cruise line Specisl Needs department should be ablr to get you the door dimensions for your ship.  

 

If you rent from Special Needs at Sea, they can tell you which devices fit into regular cabin doors.  Try to book a cabin near the elevator lobby so you don't have as much time traveling down the narrow hallways.  (Or if you really, REALLY can't fit it into your tiny cabin, you can leave it in the hall and let them give you the dirty looks!)

 

[ChuckL]

1 hour ago, Valen9 said:

 

If you rent from Special Needs at Sea, they can tell you which devices fit into regular cabin doors.  Try to book a cabin near the elevator lobby so you don't have as much time traveling down the narrow hallways.  (Or if you really, REALLY can't fit it into your tiny cabin, you can leave it in the hall and let them give you the dirty looks!)

 

Not humorous at all. Leaving a scooter or other device is more than dirty looks! It is a prohibited safety violation against cruise line rules and hazard that could block  other passengers from getting down those  "narrow hallways"

 

1 hour ago, Valen9 said:

 

If you rent from Special Needs at Sea, they can tell you which devices fit into regular cabin doors.  Try to book a cabin near the elevator lobby so you don't have as much time traveling down the narrow hallways.  (Or if you really, REALLY can't fit it into your tiny cabin, you can leave it in the hall and let them give you the dirty looks!)

 

in an emergency. It also blocks other wheelchairs, scooters and power chairs from using that corridor at any time. 

 

[carol louise]

On 9/10/2023 at 3:27 PM, shipgeeks said:

At home, shopping, and PT, I can usually wear sneakers, although my PT nixed my newest pair, as the soles are thick and stiff, without much flex at the ball of the foot.  So they are on hold.  Yesterday I wore a pair of loafers I had planned to pack....but discovered that they can slip off without my knowing it.  Another on hold. ….

Anyone else dealing with this?

 

I do not suffer from neuropathy, but am responding with a suggestion regarding shoes. The Easy Spirit “AP1” line — a flexible, thin-soled shoe that won’t fall off — may suit your needs.

https://easyspirit.com/search?type=product&options[prefix]=last&q=AP1

I find sneakers, which I wear for exercise walking outdoors or working out in the gym, feel too stiff for indoors, so I like to wear AP1’s in my apartment. But they are still sturdy enough to wear outside for an errand, for example. 

[ChuckL]

20 hours ago, carol louise said:

I do not suffer from neuropathy, but am responding with a suggestion regarding shoes. The Easy Spirit “AP1” line — a flexible, thin-soled shoe that won’t fall off — may suit your needs.

https://easyspirit.com/search?type=product&options[prefix]=last&q=AP1

I find sneakers, which I wear for exercise walking outdoors or working out in the gym, feel too stiff for indoors, so I like to wear AP1’s in my apartment. But they are still sturdy enough to wear outside for an errand, for example. 

I have purchased slip on sneakers from Skeechers. They appear like they are laced, but that is just part of the design. They are VERY lightweight with elastic sides to hold them on,, and have very thin soles as well.They are really comfortable and don’t push on the numb feet. 

 

I believe they came from this collection of shoes:

https://www.skechers.com/men/shoes/hands-free-slip-ins/

[shipgeeks]

Just an observation.

We no longer drive, but use a county ride share service for appointments, groceries, etc.  Yesterday there were four other riders in my van, young adults who appeared to have severe, probably life-long handicaps.  It was yet another dose of reality to me, that my malady could be worse, and it could have happened at a much earlier age.  I am indeed blessed to have had, overall, a healthy and wonderful life.

 

[GoHuskies!]

On 9/26/2023 at 3:26 PM, ChuckL said:

I have purchased slip on sneakers from Skeechers. They appear like they are laced, but that is just part of the design. They are VERY lightweight with elastic sides to hold them on,, and have very thin soles as well.They are really comfortable and don’t push on the numb feet. 

 

I believe they came from this collection of shoes:

https://www.skechers.com/men/shoes/hands-free-slip-ins/

I have a pair of those slip-ins from Skechers--they are the most comfortable shoes I have EVER worn in my 86 years, the last few with neuropathy.  I put them on out of the box from Amazon and wore them all day--didn't feel a thing except coziness.  Like I had a masseuse holding my feet.  Worth every cent and more.  The slip-in quality doesn't quite work for me--I use a shoe horn--but I don't care.  They are superb!  In fact, I think I'll go put them on right now!

[SargassoPirate]

On 9/10/2023 at 3:27 PM, shipgeeks said:

After 18 months (and six cruises) of "Why I am so clumsy?" and "I can't really feel my feet", I have a diagnosis of peripheral neuropathy.  Getting PT for balance and strength, as well as care of neurologist and rheumatologist.  Seeking to receive and share any tips, especially for on the ship.

At home, shopping, and PT, I can usually wear sneakers, although my PT nixed my newest pair, as the soles are thick and stiff, without much flex at the ball of the foot.  So they are on hold.  Yesterday I wore a pair of loafers I had planned to pack....but discovered that they can slip off without my knowing it.  Another on hold.

I will take a cane on the cruise.  I don't use it around the house, but take it for the entrance and lobby of PT facility, just for reassurance. I got some nice tips from my post here re novice cane user.

Balance is my biggest concern, though I have always dealt pretty well with rough seas. 

Not too concerned with going ashore, as our primary bliss is just being on a ship.

Anyone else dealing with this?

 

Since you asked for any tips, I'll chime in.

 

Do some research on beet root supplements and ginger capsules.