A couple of questions about how to manage with PLS

[ShiftKicker]

Chris. Thank you for your reply. It sounds like you've had a really bad run with injury. How frustrating and disheartening. I hope you will be able to get your bone reset and healing properly soon. Have you found you heal more slowly these days?
I feel exactly as you do about it being a honeymoon period. There's this spectre of years of "it will get worse" and trying to enjoy things "while I still can". Jeez.
I'm trying to approach this disease bearing in mind I'm grieving my hoped for future life and plans. I think I'm at the denial stage. Sometimes the angry stage. I feel like I'm hyper vigilant- constantly looking for symptoms that don't fit into the MND rubric, or questioning the severity of my spasticity- in the hopes I've been mistaken (and the 4 specialists who said "mnd" were mistaken too!). I even went to a shrink who sees many people with conversion disorder in the hopes I was suffering with that for some reason. As he also deals with people who have chronic and terminal diseases to help walk them through their process, he's been very helpful. However, I can't say I feel better about this in any way.
Mike, the words you use- inexplicable, dreadful, mysterious- are how I feel about this. I am very glad there's this forum to help shine a bit of light. This is the exact reason I posed my initial question. Those neuro/medical websites, though informative, are not relatable. I have NO idea what's normal, what's going on with my body and mind, what to expect next or ways to help mitigate the grind of day to day living with mnd, etc. I mine this forum for all sorts of little coping tricks, enjoy the brave humour and appreciate the honest encouragement from all the members. Many people have stated this, but it really is true the doctors don't know as much as the forum members. Thank the stars for this resource. If I only had my neurologist to depend on for information and reassurance, I'd be totally lost and more terrified than I am now.

 

[Tractor Boy]

ShiiftKicker... Ditto that! Every word.

Chris, my heart aches reading about your wrist injury. Like you, I've had my share of nasty falls and injuries. I broke a bone in my hand once. However, trying to use a rollator with an injured hand (or wrist) in a cast (or pins) is nearly impossible to not affect the healing process. I suspect this is why you didn't heal correctly, I dunno.

May I recommend getting yourself a PWC ASAP. They reduce your chance of a fall exponentially. I resisted that idea too, but it becomes inevitable. Plus they take a couple months from order to delivery.

THIS IS DIRECTED TO ALL PEOPLE IN THIS FORUM WHO EXPERIENCE WALKING OR BALANCE ISSUES. DON'T FALL! Easier said than done, right? I only use a walker to get to the bathroom at night. I'm very unsteady while doing so. Please know I picked up this tip right here on this forum:

The key is 100% CONCENTRATION ON EACH AND EVERY MOVE you are taking or about to take. THINK ABOUT NOTHING ELSE, NOTHING! Lift your feet and always hold on to something solid. I'm pleased to report I have only fallen once in the past 15 months using this method. I fell (again) when I "took my eye off the ball" for just one stupid second and wham! It sounds simple and easy but it's not!

Luckily, that last fall didn't break any bones, and I learned my lesson (again) "the HARD way."

Also, I learned at my PT sessions that a 2 wheeled walker is much more stable for me than a rollator that can slide away on me.

I hope this helps someone! TB

 

[IhavePLS]

Chris, I hope your injuries heal quickly, and that you have no longer-run complications from any one of them. I wanted to say that, at one time or another, I've also had the very same thoughts you've expressed in your initial post. I'd bet that every PLSer has them occasionally -- they're unavoidable because we're human. You hit the proverbial nail on the head, that's for sure.

I may be wrong about this, but I truly believe that the symptoms of PLS are so strange, they are so foreign to our ordinary experience that, early after the first onset of symptoms, the tendency is to turn inward -- to be preoccupied with them. And I don't mean this in a negative way (i.e., implying some form of "fixation" on them), but in the sense that the PLS experience is so foreign to the ordinary human experience that we're essentially forced to turn inward in order that we can figure it out, so that we can make sense of it. But in the search for answers, we spend more and more time focused inward, excluding ourselves from the outside world. In this context, the cycle of social isolation begins.

A friend once told me about all of this: "Mike, don't spend too much time in your own head." I neglected to take her advice (maybe things were such that I was incapable of taking her advice, I don't know for sure). But as has been alluded above, it is easy to fall into the self-isolation trap. And once you're in, it's incredibly hard to get back out.

Mike

 

[old dog]

I won't attempt to describe the emotional trauma this disease brings. It's been described by others more eloquently than is within my capability.

On the subject of Baclofen, my neuro wanted me to increase my dosage. I take 10 mg in the morning and another 10 mg at bedtime. She wanted me to double this dosage; I agreed to try 10 mg more. I have tried three times to do this. I finally told her I couldn't tolerate more Baclofen. It did nothing to relieve spasticity. I am unsure what the Baclofen did--whether it increased my anxiety level, made me weak, or interfered with my balance. The result was I felt lousy, my balance was off, and I couldn't stand up to pull up my pants.

I keep Tizanidine on hand and take a two mg tablet during the night if I have hip pain or cramping that is keeping me from sleeping. I was taking two mg at bedtime every night but one liver enzyme became slightly elevated. That's when I substituted 10 mg of Baclofen at night. I was also taking Vicodin about once a week. I stopped both Tizanidine and Vicodin, and my liver enzymes returned to normal. Hope my liver can tolerate occasional Tizanidine use.

Four years after diagnosis, I have reached acceptance. Now my biggest fear is losing my ability to stand to be able to get dressed, go to the bathroom, and shower. All three items are a struggle, but it's off to the nursing home when I can no longer do these things.

 

[dkcarl62]

Old Dog, I agree with your assessment too, I don't possess the ability to describe the emotional trauma any better either. What I have had to come to terms with tho, is the realization that exercise is not going to stop the progression. I can't exercise my way out of this one. I've always be able to overcome physical challenges by just working harder. I thought for a long time that if I hired private trainers, that I could improve my condition, which would then put me on an upward spiral toward further improvement. When that didn't work, I blamed myself, I wasn't trying hard enough, spending enough time etc,etc. So I went from gym membership and private trainers, to private trainers at home, to physical therapy with the goal of restoring my ability to walk/drive, to my current level of help, which isn't much more then helping me learn how to stretch so I don't hurt. I'm still trying to figure out why God chose me to have this disease. What lesson am I to learn? That life is really out of our control?

Deb

 

[old dog]

Deb, I, too, thought exercise would help but have learned that overdoing it seems to do more harm than good. I have a low-to-the ground stationary recumbent bike. Five to 10 minutes seems to really help in stretching out my leg and back muscles and relieves hip pain. If I do more than that, I hurt more instead of less.

 

[Chris3274]

Thank you for your kind replies. It took about 8 days but I am finally going to ucsd specialist about my wrist. My concern is this: if the repair is surgery and a metal plate
is attached then I will no longer be able to have brain mri or any other for that matter.
Are Mri's important for my PLS future?

I am scheduled to participate in the Mass. study in November. 4 MRI/PET scans in 2 years. I can't if I have a metal plate. Participating in studies and possibly trials will
help my attitude. Like I'm not just sitting around waiting but rather I'm taking action.

Tractor Boy, you are 100% correct. I lost my concentration and missed the door handle
and splat! Prior to that fall I was doing really good just by concentrating on my movements.

Deb: You mentioned wondering what God wanted you to learn from this experience or
words to that effect. I've thought about that myself and came to the conclusion that if
I have this horrible disease in order that I should learn something or as it feels, to teach
me a lesson, then I say the heck with God. All this has done is make me resentful. I have
a vivid image of a big fat cat sitting high and mighty, smoking a stogie and pulling the wings off flies. I being one of the flies.

My husband and I were on our way to the gym about three years ago. I said a short
prayer asking for protection and strength etc.. I was diagnosed with Parkinson's
at the time. 1/2 hour later I'm thrown from the treadmill and in emergency room having
5 stiches sewn in my head. I am not putting much stock in receiving any supernatural
help. I do have a few instances in my life when I absolutely believe that I received divine
help. No other explanation for it. And I am not religious. Maybe I didn't' show enough
appreciation although I have related the instances to several people giving credit where
credit was due. Perhaps a pilgrimage to the holy land would have locked things up. Oh hindsight.

I've been reading the old testament. That'll curl your hair. I'm a little ticked.
Chris

 

[Nikki J]

If you had titanium screws/plates which is usual you should still be able to have an mri. IF you need plates screws discuss this with the surgeon and get documentation that is what you have. Do let the study know of course in case they have different rules. I know someone who was refused at NIH for something that the person( a healthcare professional) knew was fine and that person had just had an mri elsewhere ( it was not a titanium issue)

 

[Chris3274]

Thanks Nikki. That was extremely helpful. I will discuss titanium with Jennifer @ MA and my nurse practitioner at NIH. And
the head of MRI dept. at UCSD is a friend. I will be very thorough. Thanks again. Great forum!

 

[Tractor Boy]

Chris,

If your surgically implanted hardware becomes an issue with the MRI's, I would certainly think they have devices available to "shield" the hardware from the MRI process. Like a big glove or something.

Doctor appointments are always intimidating to me. As I always tell everyone, be sure to take notes to your appointments so you don't forget to get ALL of your concerns addressed. Best, TB

 

[Chris3274]

thanks TB My thinking was the same regarding some shielding device however the Mass. study asked specifically if I had any metal in my wrist. I said no and he was relieved. I'll let you know.

 

[Eydie67]

Hi All,
I have PLS and I'm 69 yrs. old, this illness really sucks. I'm not sure when it first started but I think 16 yrs. ago. It has progressed very slowly thank God it gives me time to adjust as each new thing as it arrives. My speech is getting worse as the months go on, but I try and my speech is still intelligible.
I miss my independence more than anything. I loved to travel and shop and drive I hate relying on others ( although I am blessed to have a wonderful support system). I walk with a walker and fall and choke occasionally, I do use a scooter (go GO) for longer distances.
I do find myself going to dark places occasionally but I try not to take up residence there.

I tried a ALS support group but their needs are so much more immediate and overwhelming than mine I felt out of place. I do go out with my husband everyday for lunch and shopping occasionally. We still travel some but it's hard on my husband he's 72. We are down sizing our home to a senior apt. but the thought moving is overwhelming.

Thank you all for sharing your thoughts and feelings it's nice to know your not alone.
Eydie

 

[Tractor Boy]

Eydie, if you have PLS, this is a good place to be! TB

 

[Green Queen]

Whilst we're talking about managing this thing, does everyone have speech problems? Mine seem to come and go, quite stress related. I am wondering if it will happen eventually.
I struggle with words with lots of syllables, but mainly when you have to change the shape of your mouth to not sound garbled, or similar words together...

Hello Eydie, I hope you feel welcome here.

God bless, Janelle x

 

[Eydie67]

Hi Janelle,
thank you for your support. I think the speech problem is the worst. I struggle with certain consonants and lots of syllables it's so frustrating.
take care and I do think I will become a active participant.
Eydie