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ShiftKicker

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Joined
Mar 16, 2015
Messages
8,348
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I have a few questions with regards to PLS. I know I have a few years to go before actual diagnosis, but I've been told to assume till the specialist tells me otherwise. This is a bit of a ramble- please bear with me.
I have recently discovered Baclofen had made my spasticity worse. The neurologist had been concerned with how quickly I had progressed (his experience with PLS was it was very gradual) and how baclofen just wasn't working to keep up. It was recommended I gradually reduce my dosage from 80mg daily to 20mg, and then add Tizanidine to see if that helped. Well, as soon as I started reducing the baclofen, my daytime spasticity became less noticeable. The brain fog went- I also was able to focus on more than just being tired and wobbly. It changed from constant moderate/severe spasticity to just episodes of moderate spasticity throughout the day. Night time spasticity became more painful and severe, weirdly enough. I have now completely cut the baclofen out, but am wondering if anyone else got worse with baclofen? Is Tizanidine similar? I feel like just sticking to mmj at night and soldiering through the day.
For those who have suffered with PLS for a while- how do you carry on? It seems like everything has just narrowed down to symptoms, managing medication, fostering energy and worrying about whether I have 20 years of profound debility and how I'm going to deal with it. How have you dealt with the profound fatigue and the unknown progression? I've been offered yet more drugs to manage mood, with the idea that my constant fatigue is depression, but with how I've responded to Baclofen, I have my doubts about throwing more chemicals at my body. Seems more like they're more a distraction than actual help. I can not imagine moving through my remaining years in a complete fog of drugs to deal with spasticity, pain, mood, etc, etc. For those who have a few years on me, how do you move/carry on? When does it stop feeling so new?
 
Hi,

Baclofen should not make spasticity worse -- it may not improve spasticity, but its chemical composition/properties will serve only to reduce spasticity (or it may not work as effectively), but it certainly would not cause increased tone. Tizanidine can be enormously hard on the liver (I've been there), so be sure to have your liver enzymes tested.

Your second question is not only interesting, but it is profound as well. And I say this in the sense that everyone's PLS experience is uniquely (and very decidedly) their own. I've personally been going through severe questioning of my own symptoms, in the context of how they have not only changed my sense of well-being, but how they've shifted my overall outlook on life. To have PLS is an experience that is so foreign to my past world in which I worked 2 full-time jobs, ran marathons, went to the movies with my wife, traveled all over the country, and earned a doctorate -- in other words, I LIVED my life before this disease turned my life on its head. These days, I spend much of my time reclined in a lounge chair due to back and neck spasms. I still work full-time, but from home (in all ways, working has become increasingly more difficult, but I persist).

Everything about PLS -- the weird loss of balance, the out-of-control cramping, spasticity, choking, and fatigue -- seems so otherworldly to me. It is true that everyone handles chronic disease differently -- some cope well, others do not. But WHY some cope unexpectedly (poorly) is a real question for me. I while I have always been the person who everyone came to - and looked to - when they were in crisis. But I've not handled my own "crisis" well at all -- and most of the people I know are completely taken aback by this). The whys and wherefores are a complete mystery to me. And I can't change how I now think and feel, no matter how much I hate it, and no matter how hard I try. My neurologist (as brilliant and well-known as he is) seems to have no clue.

As to your point about fatigue, Shiftkicker, it is probably impossible to tease out what causes fatigue -- physical symptoms or emotional ones. But I'm sure that - in some combination or another - it's both. Somewhere near the beginning of disease onset, the physical fatigue spurs on the emotional fatigue -- and vice versa. And then the cycle begins....and repeats itself again and again. It's all about that all-important mind-body connection (which I can't seem to get a grip on, despite my professional knowledge of it -- yes, I actually worked in this field).

But one sure answer to your question is that you will inevitably note progression, then plateaus. Certain progression (or new symptoms) may be of little concern, while others may be startling. But unlike classic ALS, know that the progression is mostly insidious (although even so, the process of adapation keeps you very busy).

I do apologize for the negativity in the above response, but I'm still trying to figure it all out -- if I ever do (and I really can't believe I'm sharing all of that -- the truth is that I can't effectively hide the exasperation that PLS has brought with it)! :)

Mike
 
Mike, thank you. You've managed to put into better words what I've been trying to work through. I call it "down the rabbit hole" when trying to explain to people what the last year has involved. I appreciate the honesty about your disconnect and struggle to deal with PLS. I value this forum, and the people on it.
Yep, I'm the weird one who got more spastic from Baclofen. It's a documented response- though very rare. I'm also the type of person to get wired when taking something that sedates anyone else and gets sleepy when drinking coffee. I'm a contrarian.
With regards to the mind body connection- well, gee whiz. On all sorts of levels that brings a dark chuckle. Clearly that connection is all sorts of wrong! But I understand, if the mind is in a dark place, the body reflects that, and vice versa. I am really hoping there is more in the toolbox than drugs that may or may not work. Like you, I've surprised myself with my response to this. High achieving, athlete, tonnes of community involvement, mediator and peer advocate within my sports league, etc,etc, and now, barely leaving my chair and completely withdrawing from all social interaction. I am not even completely physically incapacitated, nor seriously struggling yet compared to so many of you on this forum- which is why I am worried about the future. If I'm so knocked out while I still can do things relatively struggle free, how on earth am I going to deal with serious debility? I should cope better than that.
One of the things I've really struggled with is the WHY. Why is this happening? Why me? Why can't it be fixed? Why can't they tell me what to expect? What did I do to cause this? There are all sorts of relentlessly upbeat inspirational sayings out there that seem to imply we just need to change our outlook, or are experiencing what we need to to learn from life, or are on a great adventure/journey and can gain huge insighat and inspiration from experience. Which all make me alternate between guilt and resentment. Dark places this past week. Many thanks for your very raw and honest response, Mike.
 
Hi SK. I'm waiting for final diagnosis as well.
I find life is Accept, Adjust, Accept, Adjust...
There will be a progression spurt, we accept it, make adjustments then wait until the next one!
My longevity with this does play on my mind, I'm 42, but I try to not think too much about the future.
I don't know if it will ever get easier, sorry. If you accept the fact there will be constant changes, you are half way there.
God bless, Janelle x
 
When I first took baclofen on top of making me tired it made my legs feel rubbery and actually made my balance worse. Tizanidine makes me incredibly sleepy. I take both at night for leg cramps. I have had PLS for 12 years and currently confined to a PWC. I have Bulbar PLS which is very rare and the loss of my speech made me feel very isolated. I finally had to go on disability after 6 years. I was also very active, worked full-time, had side consulting business, on board of non-profit, robotics coach at local middle school, worked out and ran 4-5 days a week and was a husband and active father to 2 daughters. I was diagnosed after 2 years. Bulbar ALS progresses rapidly so my doctor told me if I had ALS I would be near death.

PLS progression varies wildly. Some people can use a walker after 20 years and some are confined to a PWC after a few. My progression to a PWC took about 7 years so it was slow. I was able to handle the slow progression. I should have made some adjustments to make my life easier like moving to a more handicap friendly residence.

Wishing you the best.
 
Hi again, SK,

Actually, you've captured (very well) my sentiments in your follow-on posting -- and "down the rabbit hole" is the perfect characterization of this whole PLS experience.

As with anything that is new or unknown, SK, you'll adapt --- and you'll adapt even to periods of progression, knowing that a plateau will be soon likely to follow. But this doesn't make the entire thing any less surreal.

I'm not the same person anymore, and I don't like who I see in the mirror (I see a 56 year old who used to move from thing to thing, always on the go, etc.). It's a mystery to me that I've not been able to cope as effectively as I would have coped in the not-so-distant past. When I was first diagnosed, I was all "bravado." But the bravado has to a great extent dissipated, and this "new me" (this "new me" that was largely birthed by my lack of initial acceptance of having PLS) -- the one with all these new and very strange physical limitations -- has taken its place.
 
Wow! All you guys write such eloquent posts (above), and I feel I'm not gifted enough to participate in this conversation. However, I can relate to each and every one of your stories.

Just a few short years ago, I never paid attention to the terms I've now become accustomed to. Words like spasticity, Baclofen, tiZANidine, clonus, balance, PLS, ALS, cramps, PWC, bulbar, clinics, upper motor neurons, lower motor neurons, ANY neurons! WTF?

This thing came out of nowhere and completely ruined my life! Thank you ALL for sharing and for not leaving me alone. TB
 
TB, my vocabulary has been vastly enlarged, like you. I can talk at length about all sorts of really technical and medical sounding things now. I may not know exactly what I'm talking about, but it sure sounds pretty impressive.
 
Hi SK,

I rarely post but found your thoughts and experiences with medications so similar to my own that I couldn't resist chiming in. I also always enjoy Mike's insightful responses (thanks Mike) and have missed them.

I did not respond well to baclofen either--I couldn't tolerate the serious sedative effect it had on me, even at a low dosage, and felt increased weakness and/or wildly varying levels of spasticity, so I could never say it was definitely helping but didn't know if it was because I was progressing or just not responding well to the medicine. So I decided to go off all medication (didn't do well with Tizanidine either) except mmj at night and monitor my progression off rx medication. The mmj helps with sleep, anxiety, and loosens me up at least for a few hours so it seems to kill three birds with one stone (unintentional pun), at least so far. And so far no cramping, although I'm very tight and spastic by early morning and do everything I can to avoid those horrible 'stretch locks' that feel like my whole body might turn into one big cramp. I also swim (though getting much less efficient in the water), cycle on a recumbent road bike (this is a new fun thing for me and we take it only on trails), take warm baths often, and stretch a lot to combat the spasticity.

The emotional impact of this ridiculous disorder is a tough one especially because it's ever changing, and usually not for the better. I cope by trying my best not to look too far in the future and staying as active as I can, but it's becoming increasingly more difficult as my abilities decline slowly (increasing spasticity, horrible balance, more hand involvement..) and I become more dependent on my husband for just about everything--getting to the pool, getting my bike into the car and climbing onto it, cooking, cleaning, etc, etc,.... This forum is very helpful for advice and support but not enough for me to cope with the daily drudgery of living with severely impaired function and mobility--it's a constant and exhausting mental and physical challenge. I am also fairly isolated, living out in the country in a not yet very accessible home that my husband built from the ground up so I don't see a change of location happening soon, so that doesn't help.

Like many on this forum I was always very physically active, had lots of hobbies (most that I can no longer do, except read--phew!), ate very healthy. etc. I have been told that I'm 'doing so well!' by many people, but they don't realize that I am only just starting to accept that I have a permanent, likely increasingly progressive health problem. There may be some very dark days ahead but I'm going to continue to do everything thing I can to find joy in life. And really, I'm finding there is still a lot to be thankful for, at least for now, so maybe that's what keeps me going.

Wishing everyone the best!

Kathy
 
Hi Kathy, many thanks for the enormously kind (but undeserved) words. It's my aim to give others some insight -- even if it is subjective -- in terms of what they might expect, meds, and other. However, I really needed to step away from the forums for a while, only to "unclutter" my thoughts about everything (just as I've said above) -- much of which I'm only beginning to accept (after several years of this), after a very long period of denial. As my symptoms have progressed, I've found PLS to be more mysterious and even more dreadful than I could have imagined. The "real-world" version of PLS that I have come to know (and as seen apart from the theoretical version of PLS that can be found on most medical websites) is simply inexplicable. Plain and simple.

TB, your response post made me laugh -- because the truth of the matter is that your posts are wonderfully and consistently insightful. I know that everyone who reads your postings genuinely appreciates the wisdom *** that you have into the disease!

*** My use of the word "wisdom" is not to invoke the little-known evidence about PLS, nor how PLS should be according to the "experts." Rather, I'm alluding to that invaluable, real-world experience that PLSers have, i.e., the ways in which PLS itself plays out in the lives of real people -- and not how a PLSer's life is laid out in some medical textbook. It also happens that THIS is the fundamental value of this forum -- it is why people with PLS concerns come here: They want the REAL story - not a bunch of facts, but wisdom from those who have been there and done that (Neurologists: "Are you listening? Really listening?)... :)
 
For me this disability feels somewhat like a fight to stay in life as opposed to increasingly feeling on the outside looking in, but even when I'm doing something 'normal' and enjoyable by most people's standards, I struggle to fully appreciate it because I'm experiencing it from such a different (sadder) place now. 'They' talk about learning to live in the moment--I guess I haven't quite learned how yet but I'm making an effort.

Mike, you deserve all the kind words you get.
 
These posts are getting deep...very DEEP. So many feelings,, both physical and emotional, that I definitely relate to every day. Thanks for sharing! TB
 
Oh man. Thank you for your really honest replies. I don't feel as isolated- something I've been deliberately doing within my own social group. I am very thankful you read my initial post as something other than *****ing and complaining (who likes a whiner?) and responded with some pretty heartfelt stuff.
I realized after a single day on Tinazidine that it is not for me. I found it seriously compromised my mood. Mmj will be my sole source of relaxation at night. My "head" doctor informed me today after hearing I was done with them that both baclofen and tinazidine can cause serious depression. He had not wanted to introduce contrary medical recommendations to my neurologist, but was concerned this could be an issue. He was very interested in how other people struggling with PLS coped with mood issues and depression- he is wonderful in the fact he is both interested in learning about MND and being open about not being omniscient. He felt this forum is an amazing resource and hoped other medical practitioners were looking in to see what life was like in the trenches instead of single mindedly reading old studies and medical papers online.
Although I am not glad you all are seriously struggling, I AM glad it's not just me being feeble. thank you.
 
One of the best threads posted on this site to date. Thanks to all for sharing. Now I have to send this link to my hubby.
Deb
 
Hi all:
I typed a lengthy post and it evaporated into thin air, I am glad for that because it was awfully negative.
I fell in June and sustained a compound fracture of my right wrist (of course). Got that cast off yesterday
and xrays revealed that the bones shifted in the cast and now my wrist, fingers are a real mess. I am going
to an orthopedic specialist to access the damage and see what I can do. Wow. I feel hopeless.

Since my symptoms really graduated I have had 5 stiches in my head, a broken clavicle and now my wrist.

Before pls I can count on one hand the number of colds I've had. I was coordinated, athletic and had more
energy than most 20 year olds. I was 60 at onset. I notice the common thread between us seems to be an
athletic, energetic life. If I could come to grips with this feeling I have of getting gipped I could maybe move
on. I can't stop comparing the life I had to the existence I live now. No comparison.

And I am constantly wondering how come I have this. The odds are so high. Why me? What the heck did I
do to get this. It's demoralizing. And I am dwelling in the past. And I can't stop watching people walk. I use
to wear high heals to work. Now it's a rolator with flats. And lucky to do that.

And the scariest notion of all is; I know I am on my honeymoon with this thing. Some day I'll look back on this
time as the good ole days.
Chris
 
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