What Happened Here?

[BlsdMama]

I also wanted to mention - do you have foot drop? I ask because my weakness is in my lower leg. I was fitted for a brace recently and picked it up two days ago. The cane arrived yesterday. Balance and that darn drop foot have been my two biggest issues. Walking yesterday with the cane and brace, I felt as though my balance was improved. I think I was trying to do a lot of effort depending on the left leg because I couldn't trust the right as much? Might be something that helps you.

 

[Adennis0421]

I'm so glad to see this forum getting sparked up again! My father in law has been diagnosed with PLS after 5 years of going to doctor after doctor and enduring SO many tests. His symptoms began in the bulbar region and we are just now starting to see more affects with his balance, walking, and now stamina. He goes to the ALS clinic at UMKC in Kansas City, MO. My in-laws live in my home, so we are very involved in helping with his care. Now that I see more people being active, it will be nice to have a place to discuss treatments, therapies, etc!

 

[Thestratman56]

I also wanted to mention - do you have foot drop? I ask because my weakness is in my lower leg. I was fitted for a brace recently and picked it up two days ago. The cane arrived yesterday. Balance and that darn drop foot have been my two biggest issues. Walking yesterday with the cane and brace, I felt as though my balance was improved. I think I was trying to do a lot of effort depending on the left leg because I couldn't trust the right as much? Might be something that helps you.

Hi BlsdMama, Yes I do have foot drop also. I was tripping on all the rugs in the house so we had to remove them all. I also have been getting a lot of jolting in my legs when laying down. I get a weird kind of electrical current feeling from my waist down and my legs just jolt. Very hard to sleep. Wakes me up also. I like you am having a very slow progression. its been 2 months since my last clinic visit and I've had a few times where I had trouble swallowing and sometimes when I eat something chewy my jaw gets sore. But other than that all is the same. My balance seems the same or a little better. im not sure if im just getting use to that or what. I still furniture walk. I hope you the best and hope you can get a diagnosis soon. the waiting for the official diagnosis is hard too. hoping I get one in Jan. at my next clinic visit. Ill keep you in my prayers.

 

[ShiftKicker]

Just a quick note with regards to level of activity in this PLS forum-

Those with PLS are absolutely welcome to post in the general ALS/MND forum as well. The PLS subforum is perfectly fine to post in, but you are not limited to just posting here, should you wish to participate in other conversations. There are some topics that are specific to PLS, but many of the general discussions elsewhere are appropriate for those with PLS as well.

 

[bhg]

Thank you for this discussion. For three years after my drop foot, the neuros used the term PLS. The second EMG was ‘inconclusive’ and the third put me in the ALS Clinic a year ago with a diagnosis ‘a variant of ALS.’ Next clinic I’m going to ask him to be a little more specific. I went from cane/brace, walker and now use Jazzy 6 power chair around the house; it was just too exhausting. This is the first time I’ve heard anyone talk about it. I’m with Kaiseer. They no longer have those anatomic charts on the walls. The doc just draws little stick figure to illustrate UMN and LMN like I was in 3rd grade!!! Except for the first visit none of the 3 neuros I saw watched me walk. They didn’t actually SEE the progression. Appt would end with “I just don’t know; see you in 6 month.” I would leave holding back tears because they weren’t seeing me. Just looked at their computer screens. Thanks for giving me a place to spout off. Fortunately I have a loving husband.
Betty

 

[old dog]

Thanks, Kevin W, for getting this forum stirred up. I, like you, am guilty of not posting. I feared the forum had become a subscription thing for those in a position to pay $20/mo. or whatever the rate is. For the first year or two after joining, this forum was my main source of information. I sincerely hope it will once again become the valuable resource it previously was.

My personal situation is, six years after diagnosis, I have pretty much accepted my fate. I still manage personal care (shower, toilet, dressing) on my own but require help with most everything else. I eat everything but very slowly. I get around in the house (can't really call it walking) with a rollator walker. I have to use a wheelchair when I go out which is seldom.

I'm not especially depressed, because it takes me so long to do anything I don't have time!

 

[kevinw]

Thanks, Kevin W, for getting this forum stirred up. I, like you, am guilty of not posting. I feared the forum had become a subscription thing for those in a position to pay $20/mo. or whatever the rate is. For the first year or two after joining, this forum was my main source of information. I sincerely hope it will once again become the valuable resource it previously was.

My personal situation is, six years after diagnosis, I have pretty much accepted my fate. I still manage personal care (shower, toilet, dressing) on my own but require help with most everything else. I eat everything but very slowly. I get around in the house (can't really call it walking) with a rollator walker. I have to use a wheelchair when I go out which is seldom.

I'm not especially depressed, because it takes me so long to do anything I don't have time!

Unfortunately it appears as if the attempt to bring back the "old days" is not possible. Like you for my first two or three years I lived on this site and only had to keep hitting refresh during the day to read all the new comments. It was something to see back then, it was amazing.

I don't know if you read my situation somewhere along the line. But I'm 9 years into it, still "drag" my feet around the house and wall walk with hand prints all over (wife loves cleaning them). Hands/Fingers are stiff and shaky but still work, just not 100%. Shockingly it hit my speech quicker then I thought and is now pretty drawn-out. Now wishing I did Model Talker sooner, because even though I got through it I still sound monotone and drawn-out (great thing about a Mac is you can speed up the voice playback). But I don't use any speech device yet. I don't go out all that much anymore for "many" reasons. First, I don't feel like it, plain and simple I have dealt with this long enough that I am sick of the energy it takes to do something and I don't get excited about anything anymore. Which is terrible because my wife and kids feel like they have to come up with things to do, when most of the time I just want to stay home and not feel like I am on a field trip from a nursing home. Second, is pretty much summed up in the first...it takes so much energy that it can be exhausting to even spend time doing something minor and ruins me for the rest of the day. Third, even just going for a ride to see the leaves changing here in Northeast Pennsylvania this time of year only reminds me of how much I loved this time of year and being out in those woods hunting. Finally, as it gets colder it just plain get harder to move around being so stiff. Sure I have a power chair and a van with a ramp, but now we are getting back to everything being a hassle and just not wanting to be bothered anymore.

So there is my rant for the day, hope everyone enjoyed it...I just so happened to stop on this website while my wife was out today and see your comment.

 

[andirai]

Hello all

I am in between diagnosis as well. The Mayo says ALS/ PLS, Vanderbilt says PLS. I am all upper motor neuron at this point so there is that. I agree with everything that has been said so far and appreciate the insight. I have been dealing with symptoms for two plus years and have another EMG scheduled for April. In the last month I have received two AFO braces and while it helps me walk...people stare and that makes me sad. It is not their fault, they are just curious. I love that you call yourselves "wall walkers" that sums it up perfectly. I want to go out but it is a chore and I wind up frustrated and depressed by the whole ordeal. I am trying to find a why out of this hole but it is hard when you don't have a ladder. My doc just upped my Prozac...just in time for Thanksgiving

 

[andirai]

Thank you for this discussion. For three years after my drop foot, the neuros used the term PLS. The second EMG was ‘inconclusive’ and the third put me in the ALS Clinic a year ago with a diagnosis ‘a variant of ALS.’ Next clinic I’m going to ask him to be a little more specific. I went from cane/brace, walker and now use Jazzy 6 power chair around the house; it was just too exhausting. This is the first time I’ve heard anyone talk about it. I’m with Kaiseer. They no longer have those anatomic charts on the walls. The doc just draws little stick figure to illustrate UMN and LMN like I was in 3rd grade!!! Except for the first visit none of the 3 neuros I saw watched me walk. They didn’t actually SEE the progression. Appt would end with “I just don’t know; see you in 6 month.” I would leave holding back tears because they weren’t seeing me. Just looked at their computer screens. Thanks for giving me a place to spout off. Fortunately I have a loving husband.
Betty

Betty,

I also have a great husband and his sense of humor keeps me going. He told me that my superpower is slow motion and my character is a sloth. It is much better to laugh than cry.

 

[andirai]

BlsdMama,

I have double foot drop and just received my second brace. I am not ready for the cane but I know it is coming soon

 

[kevinw]

BlsdMama,

I have double foot drop and just received my second brace. I am not ready for the cane but I know it is coming soon

"Not ready"....a quote I use for just about everything that "would" help me, but I fight. Anyway, two braces with no cane to me sounds dangerous? When I use my two AFO's I tend to sometimes rock back on my heels and have to catch myself from falling backwards. Sounds strange but I go from fixing my tripping forward, to creating more of a chance of falling backward....:lol:

 

[andirai]

"Not ready"....a quote I use for just about everything that "would" help me, but I fight. Anyway, two braces with no cane to me sounds dangerous? When I use my two AFO's I tend to sometimes rock back on my heels and have to catch myself from falling backwards. Sounds strange but I go from fixing my tripping forward, to creating more of a chance of falling backward....:lol:

My two braces give me more confidence when walking and I have not rocked back yet...I do use a cart when possible. I am one fall away from the cane, just need to get used to the idea.