Unread 01-08-2017, 06:56 PM #1 (permalink)
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Default Loss of use of limb

Good evening all. My wife asked me a question and I have to admit I do not have an answer even with all my research. She asked if it happens all of a sudden. One minute you are walking fine and the next you are not. We leave for a cruise next week and i guess she is a little concerned. I am assuming you just keep getting weaker and weaker. I was told when I joined to ask anything

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Unread 01-08-2017, 07:42 PM #2 (permalink)
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Default Re: Loss of use of limb

I can only tell you my experience. Mine has been very gradual. First, my left leg foot got cramps and moved up my calf. I did not feel weakness at that point. Gradually, the weakness came to my left leg. I felt it and it was easier to walk on my right toes than my left toes. Then I noticed atrophy in the left calf and left knee. If I try hard, I can still walk on my toes but it feels like I'm carrying 100 pounds on my back. My legs get weaker the more I use them. So, for me, mine has been gradual. I did notice loss of fine motor skills in both hands but, again gradual. I can no longer squat but I could for quite a while.
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Unread 01-08-2017, 08:50 PM #3 (permalink)
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Default Re: Loss of use of limb

Firstly it will partly depend on the speed of progression. There is no rhyme or reason to that one - some are rapid on through to those that are very slow. Some speed up and slow down at times to keep it extra tricky.

However, I would not say that any PALS is walking perfectly one day and then not walking the next.

However, some PALS are having issues with walking (or other tasks if the limb is the arm) for a period of time and then suddenly one day cannot weight bear. It's kind of like having a tipping point. Up to a certain point there are enough functioning muscles to keep the limb working, then after that point there are not. If it's walking, the person may still have some movement etc, just have past the point of being able to walk. Maybe they can weight bear with some assistance still.

I hope that answers you. The one huge issue with this disease is that no two PALS are exactly alike, so predictions are just impossible.

Now I would like to ask - what is your wife's concern? Maybe we can address that?
I'm presuming it's about walking, but maybe it isn't. If you can tell us what limb/s, what kind of functionality the concern is over and where you are at now, we may be able to give some good contingency ideas. That way your wife may feel that she is prepared for things that may be a concern?
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Unread 01-08-2017, 10:31 PM #4 (permalink)
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Default Re: Loss of use of limb

I agree with Tillie's assessment as what happened with Steve. He went through stages before he quit walking.
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Unread 01-09-2017, 12:31 AM #5 (permalink)
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Default Re: Loss of use of limb

Larry went from walking unsupported a couple of miles (slowly) to only around the block, overnight. But he was able to use a rollator to slow walk a limited amount for another year and change, though he got a PWC in the middle of that. He lost the ability to stand entirely 15 months after that initial change.

Not knowing where you are going on the cruise, if the worst happened, I'd imagine you could buy a rollator in most jurisdictions, and as with any illness, I'd identify the best hospital in advance for each of your ports of call. If you are going into areas where the health care is a significant cut below what you're used to, or simply far from your home, you might want to sign up for a separate travel policy and/or something like MedJet where you could be flown out to the hospital of your choice.
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Unread 01-09-2017, 07:01 AM #6 (permalink)
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Default Re: Loss of use of limb

Thanks everyone. I am still fully functional other than my speech and swallowing. This started 18 months ago. I still walk every day with my dog (actually it's more my dog walks me). I don't have the stamina I did a few months ago and pay the price when I overdo it with sore muscles. We have 3 cruises booked this year and I think she is just starting to really think about the future. I told her we will just take it a day at the time and try to do as much as we can while I am able.

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Unread 01-09-2017, 10:00 AM #7 (permalink)
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Default Re: Loss of use of limb

Ya Bruce, you may carry on for decades.
Al
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Unread 01-09-2017, 10:44 AM #8 (permalink)
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Default Re: Loss of use of limb

The way my neurologist explained it to me was if it takes 200 neurons to walk and they begin dying off one at a time, walking will become gradually more difficult. With 199 of the 200 gone, walking could still be possible but a struggle. When that last neuron goes, walking goes with it. Based on my progression, this simple description has been pretty accurate.

As Laurie said, do a little homework before your trips and be as prepared as you can for any setbacks. If you have a plan in place, that might reduce your worries and allow you to enjoy the cruises even more.

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Unread 01-09-2017, 12:20 PM #9 (permalink)
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Default Re: Loss of use of limb

Cruise vacations are one of the easiest ways to go when walking becomes a challenge. You can have scooters or wheelchairs delivered right to your cabin. The cruise line will have lots of information if you let them know about possible future needs and will help you make contingency plans. Once you and your wife see how accommodating they will be, perhaps the concerns about the trips will lighten.

We traveled a bit in 2015 and I had the same concerns. Never know how this beast will be affecting 3, 6, 9 months down the road. But the travel insurance and reading about others' experiences here eased my mind and we ended up having the trip of our life. Wishing you great times, too!
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Unread 01-09-2017, 04:05 PM #10 (permalink)
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Default Re: Loss of use of limb

Go ahead and rent a wheelchair and have it delivered to your cabin. If you never use it then just keep it folded in the corner out of the way. If you ever do need it you’ll be so glad that you have it. I know from experience that it’s a long way from one end of the ship to the other. I wore my legs out on the way to the dining room, couldn’t take another step, so glad that I could send my son back for the wheelchair.
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Unread 01-11-2017, 02:16 PM #11 (permalink)
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Default Re: Loss of use of limb

For cruising I'd recommend a scooter (I've tried both a wheelchair & scooter rentals). The scooter gives you more independence -- I can go somewhere my husband doesn't want to, or if he's napping, etc. etc. We found that sometimes its difficult to push a wheelchair over the carpeting on the ship. I rented from Special Needs At Sea - thru my travel agent, who specializes in cruises for the disabled. We had no problems and found the prices well worth it.
Dianne
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