Old 11-02-2016, 09:53 AM #1 (permalink)
New Member
 
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Labinma Labinma is offline
New Member
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Default Leg Stiffness

HI all, My husbands walking gate has been changing and today he complained of leg stiffness. Is this the beginning of losing his ability to walk? Thank you.
Labinma is offline  
Old 11-02-2016, 11:19 AM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,373
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,373
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Leg Stiffness

If the "stiffness" is that legs are hard to move, it is more likely. Transient pain could be from another cause. But if the gait has changed from before and is slower/less precise, I'd order a rollator now to make sure he has support when he needs it. And begin talking to your clinic about the process for getting a power chair.
lgelb is offline  
Old 11-02-2016, 01:42 PM #3 (permalink)
New Member
 
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Labinma Labinma is offline
New Member
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Default Re: Leg Stiffness

Thank you so much. Don't suppose a time frame can be given? This disease is hard for the caretaker that is pro-active but the PALS rather not acknowledge. Do I go ahead an order these things with my Chapter that I secretly registered with, or do I wait to have a house visit by them and get him on board? Do I go ahead and just order what is needed and not say anything? Thank you for responding, this place is really my only life line during this journey. Lisa
Labinma is offline  
Old 11-02-2016, 04:37 PM #4 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,373
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,373
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Leg Stiffness

We can't predict, but progression is often fairly linear during the "middle" stages. You would be a better judge if you graph things from before he was diagnosed, using months as the unit.

Having a rollator stashed doesn't require his consent and I would just do it. Order or borrow one based on his height. He will have to be measured much more thoroughly for his personal power chair, and would have to buy into a loaner just to use it.

Not sure how much in denial he wants to be, but might say something like, "You seem to be walking more slowly these days. I read on the Forums that falls are really dangerous for people with this disease, so I've ordered a rollator that can help you walk when you need it to."

And based on what you see over time, which you can also discuss via call or e-mail with your clinic OT/PT (if you are sneaky, you could send video), phase in discussions of a manual chair/power chair with the same kind of approach. If he is a slow progressor, you could also discuss a scooter option. The most important thing is to give him as much perceived control as possible, because ALS takes away quite a bit.
lgelb is offline  
Old 11-02-2016, 05:00 PM #5 (permalink)
New Member
 
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Labinma Labinma is offline
New Member
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Default Re: Leg Stiffness

Thank you so much.
Labinma is offline  
Old 11-03-2016, 02:14 AM #6 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,374
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,374
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Leg Stiffness

I always had equipment stashed ready in advance.

It's really important to avoid crisis.

My Chris had FTD and what would actually happen here is he would say he wanted whatever piece of equipment and when it would arrive he would look at me like I was stark raving mad and say - "I'm not using THAT". So I'd smile and put it away.

Often decline seems sudden, but it's actually that muscles are wasting and they manage for a certain period of time until it's like too many waste to support doing something. It wasn't so much that they suddenly couldn't, as they reached that point.

Then I could pull the magic piece of equipment out and we were ready.
affected is offline  
Old 11-03-2016, 06:59 AM #7 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
♥ Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Leg Stiffness

Are you going to clinic soon? Amy would know right away if she watched him walk. She nailed my gait issue in about 30 seconds last year. When she said it it was obvious she was correct
Nikki J is offline  
Old 11-03-2016, 04:52 PM #8 (permalink)
New Member
 
Join Date: 2006
City: gulf coast
State: florida
Country: US
Diagnosed: 11/1997
Interest: I am a caregiver for someone with ALS/MND.
Posts: 79
vw-fl is on a distinguished road
vw-fl vw-fl is offline
New Member
Join Date: 2006
City: gulf coast
State: florida
Country: US
Diagnosed: 11/1997
Interest: I am a caregiver for someone with ALS/MND.
Posts: 79
vw-fl is on a distinguished road
Default Re: Leg Stiffness

In addition to what others have posted, cold weather can cause stiffness too. There is an old thread, This Cold Weather by wewillbeatthis on 2-27-2006, where PALS discuss cold weather causing stiffness. My husbands first symptom was noticed when he was outside in cold weather trying to scrape barnacles off the hull of our sailboat. His right hand would stiffen and he was unable to grasp the scraper. We moved from Maryland to Florida to get away from the cold.

vw-fl
vw-fl is offline  
Old 11-03-2016, 10:00 PM #9 (permalink)
bigmark1954's Avatar
Senior Member
 
Join Date: 2014
City: taylorsvill
State: utah
Country: US
Diagnosed: 01/2014
Interest: I have been diagnosed with ALS.
Posts: 991
bigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of light
bigmark1954 bigmark1954 is offline
Senior Member
bigmark1954's Avatar
Join Date: 2014
City: taylorsvill
State: utah
Country: US
Diagnosed: 01/2014
Interest: I have been diagnosed with ALS.
Posts: 991
bigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of lightbigmark1954 is a glorious beacon of light
Default Re: Leg Stiffness

As noted there are no common denominators in how we progress. I was diagnosed about 3 years ago and had symptoms about one year before. I am starting to lose my legs and know all to well about the " leg stiffness" you are referencing.

Cold is definitely a nemesis to this "stiffness" dynamic. For me standing in place tends to stiffen and burn my legs out faster than walking lately. Cramps are becoming more common in my legs.

One other thing I have started experiencing is a feeling of walking in mud up to my knees. It is like a restriction that really slows me down.

Just adding my unedumecated thoughts to this discussion.
bigmark1954 is offline  
Old 11-03-2016, 10:48 PM #10 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,374
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,374
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Leg Stiffness

Definitely when Chris could use his hands but they were weak, in the morning when it was cold they would be very stiff and weaker as a result. As the day warmed, they loosened up to some degree (he also had a lot of spasticity anyway).

Then we went into summer and he lost the use of his hands altogether.
affected is offline  
Old 11-04-2016, 09:10 AM #11 (permalink)
New Member
 
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Labinma Labinma is offline
New Member
Join Date: 2016
City: Boston
State: Ma
Country: Us
Diagnosed: 06/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 73
Labinma is on a distinguished road
Default Re: Leg Stiffness

Thank you all PALs and CALS. I simply can't imagine the sensation as it defeats through to absolute no use. I so appreciate all your feedback as it provides invaluable insight into what no one would know unless experiencing first hand. ��Stay strong all. And live in the moment meaning has taken in a whole new force for me.
Labinma is offline  
Closed Thread

Tags
ability, stiffness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Stiffness GilWest General Discussion About ALS/MND 4 08-10-2014 08:36 PM
Stiffness? joycecaroll Do I Have ALS? Is This ALS? 13 06-18-2014 11:25 PM
Stiffness Amylou29 Do I Have ALS? Is This ALS? 29 01-10-2014 05:21 PM
stiffness? samb25 Do I Have ALS? Is This ALS? 16 05-21-2012 08:36 AM
More pain and stiffness jl73 General Discussions About Fibromyalgia 3 09-15-2011 09:17 AM
Stiffness in fingers Daniel Hopper General Discussion About ALS/MND 6 07-12-2011 07:38 PM
Spasticity or stiffness? Lavender Lady Do I Have ALS? Is This ALS? 19 07-26-2010 04:43 PM
Stiffness question, please rayray123 General Discussion About PLS 2 05-07-2010 03:04 PM
tiredness, stiffness jl73 General Discussion About PLS 3 06-25-2009 05:32 PM
stiffness lydia Do I Have ALS? Is This ALS? 7 10-18-2008 11:53 AM


All times are GMT -5. The time now is 08:20 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016