So, I fell

[Cammarak]

Other day I got out of shower and shut my bedroom door--turned to look back at the door while moving forward and BOOM! Down she went. Scared the hell out of me. So is this the beginning of the end? Bad balance, wheelchair, no driving, no job? Now I'm noticing that even while sitting--driving--if I turn my head while moving forward I completely lose my balance. I've known for awhile not to turn my head to look at anything while I'm walking, but never went down like a ton of bricks before.

 

[affected]

I'm so sorry about the fall, it would be so scary. You may need to think carefully about safety in the shower. Do you stand to shower? That same fall in a shower could have been very serious, bathrooms are deemed the most dangerous place within a home for good reason, all that glass, hard tiles and often sharp edges.

I'm not sure what you do for your job, but if you cannot turn your head whilst sitting you truly need to stop driving IMHO. Do you need to walk for your job or could you do your job from a wheelchair?

I would certainly book an appointment for a review of your mobility and see what your best next options and strategies are.

 

[Cammarak]

I am a teacher--and I love it! Screw everyone who disparages us--the majority of us do it bc we love it and we love your kids! Okay--enough of that-- I've noticed the balance thing before--did a lot of yoga and physical therapy--special focus on balance-- thought I was okay and then this. I know enough to use my mirrors in car rather than turn to look. But damn, just not ready for this.

 

[Nuts]

So sorry about the fall--I can only try to imagine how frightening it was. We've had a lot of "conrolled sits" around here, but the ton-of-bricks falls are in a class apart...

I have to agree with Tillie; if you lose balance just turning your head, it's not safe for you to drive. What does your OT say about walking? If you are still strong enough, perhaps a walker could help take care of the balance issues. No, a walker is NOT the end of the world--my VERY manly man who once said he'd never be seen with one has two (part of the growing fleet of assistive vehicles) and he uses them. Of course, mama thinks it's about time to retire them, but nagging is part of the wife's job description. It'll take a couple more falls-with-walkers to convince him.

Is there any other way for you to get to work when you quite driving?

 

[Cammarak]

I'm looking at canes--may just go for walker--I wanted a cane that was actually a gun ala James bond.(jk). Problem is I work 36 miles away from where I live and there are only two people who live near me and one is my boss! Hate to ask the other dude--plus I agreed to put on two plays and I'd hate to disappoint all those kids. I'm just so unsure about everything--I keep thinking that if I don't make a big deal about it and just carry on, I'll be fine.

 

[Chris3274]

Hi: I have experienced balance problems from the onset. I noticed the first symptoms about 5 years ago. I walk with the aid of a rollator because of falling. I still work and drive and do household chores. I don't walk and talk on the phone or look around. My focus is straight ahead. If I need to look sideways or behind me I come to a complete stop. NO QUICK MOVES. If I reach for a handle and miss my mark or grab at a stationary object and my hand slips, I am down like a rock. Actually, more like a sling shot given the right circumstances. Since this is your first onset or awareness of poor balance and associated falling you will have to be very diligent in your movements. Take your time. Just like learning how to walk all over again, but older and without the fanfare. Unfortunately for me, learning my limitations resulted in many more falls because I didn't know how to protect myself against this unseen force. I would fall for no apparent reason. Now there is always a reason. When I get careless I fall. Most cases, I fall when I don't have the rollator and I am holding onto counters and walls, trying to walk. I have been very lucky so far. Things are tough enough for me AND MY HUSBAND without adding a broken bone in the mix. I have a safety handle at the doorway of my walk in shower and a bar on the inside wall. Very helpful. I use to be able to shave my legs by easily balancing on one foot,
bringing the other leg up. Like a flamingo. At age 60. What happened?!##?
One more thing. Buy shoes that angle up at the toes just a little. Shoes that are flat from heel to toes get caught on cracks & uneven surfaces. There is never time to move my foot
like a normal person would do to correct balance. I'm down like a mighty oak. The good news is this. All my friends and family are very aware now. When they are around me they are on high alert. Good luck. Chris

 

[Clearwater AL]

Cammarak, in your first Thread you wrote you were wrongly diagnosed with ALS for two years but they then changed it to PLS. Wouldn't a terminal diagnosis have entitled you to early full retirement with only 6 years to go? I'd check into your school retirement contract... with an initial diagnosis of ALS but now PLS and your progression there might be a clause for you to retire now. Did they confirm the PLS? Are you a union teacher? That driving thing is dangerous... for you and others. And I'm surprised the Neuros didn't find concern with that as I've read you've mentioned it to them.

 

[Cammarak]

Hey Chris! You sound an awful lot like me! Good tips and thanks! Never thought about the shoe thing--I always wear easy slider shoes since I have a funny looking marchy gait if I try to lift my feet when I walk(they just don't bend)and so I kind of shuffle along. And Al, I def have looked into retirement but a disability retirement won't allow me to keep my health insurance. Riluzole is 1,283.78 a month without insurance. Plus I won't make enough to afford my home and my kids' lives. As soon as my daughter finishes high school I can give everything up and go on disability and move out of my house. 2 years. I feel like Ive got this no problem and then something stupid like face planting in my bedroom reminds me that I don't.

 

[Clearwater AL]

Cammarak, if you're a NYSUT or UFT teacher talk to your Union Rep about the health insurance thing. If your progression continues to progress as you write the driving thing will force the issue. You fell at home... what if you fall in the class room or on the school property? They have you on Riluzole already? Hope you can make it for another 6 years or 2 years as you've written.

 

[affected]

I'm a little confused as I thought Rilozole is only used ALS rather than PLS? Am I wrong on that one? I just did a quick search back on this part of the forum and it seems to be the case.

 

[Clearwater AL]

Tillie, I don't think you are wrong. It has been discussed elsewhere that Riluzole has of no purpose in treating PLS. It's primary direction is to somewhat delay a vent or trach. Then, sadly, it's very expensive for a little more time benefit.

But... recently it has been found purposeful for treating psychiatric conditions of refractory depression and anxiety disorders because it does have antidepressant properties.

(Yes, there are some who say they have been taking it for many years and attribute their longevity to it.)

It has been prescribed for the furthest progression (of a few) for PLS but with doubt of purpose by most Neurologists. But... every case is different.

 

[Nikki J]

Well riluzole is supposed to slow ALS progression generally. I do not think it is claimed to be specific to respiratory function. I know it does not have an indication for PLS but I have wondered why it does not get used in the early days when it is unclear if it is PLS or slow early UMN dominant ALS? Or if you believe PLS and ALS are just different points in the same spectrum would it not be worth a try? In ALS it is supposed to slow progression by 10 percent. If it did that for PLS it would be a bigger deal. Just curious what your neuros say

 

[Clearwater AL]

Nikki, I'd guess if you have been diagnosed with PLS, your Neuro believes it will slow the slow progression of PLS, your insurance will pay for it with a PLS diagnosis, Medicare will the same, health systems of other countries the same or you can afford it out of pocket and have none of the side effects... why not?

 

[Cammarak]

My neuro started me on riluzole last year--I can't tell if he believes that PLS is just UMN dominant ALS--I know my neurosurgeon (who originally diagnosed me) believes there is only ALS to different degrees. It was explained to me that it was the only drug that offered any chance to slow things down so it made sense to try it. I wouldn't want to not take it and then find out ten years down the road that if I only had taken it I'd still be walking or whatever.
I never read or heard that it was for respiration--I'll have to check into that. I don't have issues there--the spasticity seems to have skipped my intercostal muscles and gone from lower back to neck/shoulder areas.

 

[davbo49]

i started about 3 years ago falling. im in a chair now in this past year. rilozole is to slow it down and not by mush ether. maybe 2 to 3 mouths. im still losing why im on it.