The things unsaid

Thank you @eric.kiser . as always your input is kind, intelligent and valuable.

My diagnosis was about 5-6 years ago. They predicted then That i’d get my wheelchair within about 5-8 years.

Unfortunately, the doctors seem to actually be smart and know what they are talking about. I still get around good, but falling is becoming a relatively regular thing.
In fact, the fall Monday morning was the deciding factor in what I’ve had to do.

Calling my employer and my union rep to tell them what was going on and that i believed it was time to stop working was no fun-im an electrician, i can’t be involved in work that involves other people’s safety (or my own) if i can’t absolutely trust my hands.

I always traveled to work. Now, I’m going home.

The seasons have changed for me, and a new page appears for me to fill with the story of Paul. It Isn’t specifically a bad thing. Attitude is everything- and with a good attitude, ANYTHING is possible.
My story doesn’t end here, my love affair with bass doesn’t end here.

And if i can face my issues with half the grace and strength our recently departed friend joe derkes (@Jazzbass19 ) did, that’s a huge win.

Typing isn’t so easy these days, numb fingers will do that. But I’ll still be here.

I wish i could list all the people here who have been so supportive, but that list is long😁

14 Likes

Just keep chugging that bass…with destruction

7 Likes

I’ve seen MS up close myself. One of our rural carriers had it and it forced her into early retirement because she could barely walk (she used a cane). We all saw her battle every day. It’s a terrible illness to have. @autumnsdad1990 hang in there and play as long as you can. We have your back.

7 Likes

For now on when I play the bass I will think of you and of people in same situation as yours. I get fatigue at my age but still able to play and therefore will consider myself lucky and be thankful while I’m still able to play. Hang in there. Wish you all the best.

7 Likes

Keep trying brother, my wife has MS and I understand the struggle. I have some pretty serious issues myself due to arthritis and some nasty stuff that happened while serving in the Army, but, hell, I keep playing even though I know I’ll never be Jack Bruce, more like Jack Benny…just do yourself a favor, DO NOT SELL YOUR GEAR!!! I did a long time ago out of frustration, and regretted it, so I bought new gear this year and started playing again, feel like I’m starting all over again, but, I’m enjoying it. Like I said, I’m not very good, but, I do enjoy playing, you should too. Good luck brother, KEEP THUMPING !!!

7 Likes

Between your attitude, perseverance and the strength of your family you will prevail and continue doing what you love for a long time to come.

Stay strong.

7 Likes

This!

I got rid of all my gear because I thought I would never be able to use it again. Huge mistake that I still regret. I bought all new gear years later and it’s mine until it breaks or I’m dead. I don’t care if I can only stare at it.

I’m real sorry to hear that. It’s a rough slog. MS doesn’t kill you quick, it usually lets you live out all your days. But it steals your quality of life for all the time you have left. A little at a time, so everyday you wake up wondering what you won’t be able to do today. Living life becomes a moving target.

Most days, I try to pretend I don’t have MS and try to do whatever I can. Other days it punches me in the face like a shitty reminder of all the capabilities I’ve lost

10 Likes

@eric.kiser , you always have what i wish i could say at hand. Thank you. You’re absolutely right. What won’t happen well today? How many people are going to stare when i talk because i have scanning speech and can’t make words happen well? What new place is going to hurt today?

It’s a drag, and I’m grateful. I’m grateful that i don’t have it worse in this life than i do-because there are stories that make mine look like a walk in the park.

I have a great family, they are amazing. I’ve had a great career. I can drive through numerous states and see buildings and facilities and know that i had a part in that.

I have a deep, abiding love for music and the ability to express myself that it gives. And i have today. I’ll take that.

10 Likes

Yes. I haven’t heard of scanning speech but I have some aphasia. I make a game of charades out of it where I act out words I can’t find and my family sees who can guess it first. I had lost the word “spinach” for a few years. I finally taught myself to find “spinach” by thinking of “baby spinach” and then dropping the “baby” part. It hadn’t occurred to me that spinach and baby spinach would be stored in two separate places.

It’s funny when I do this with family and friends because it’s a game everybody gets in on. Especially when they get competitive and start talking trash about who’s going to get the lost word from Eric’s brain first. :rofl: :joy: :rofl:

Not so much fun when interacting with people I don’t know.

My kids were still young when I had the first debilitating exacerbation. I didn’t want them to worry or be scared by what was going on, so I made a game out of everything having to do with MS. At least everything I could.

I was talking to a lady, trying to explain this and told the story of one time when I was having an exacerbation my son yelled, “He’s exacerbating! Get him!” and he and my daughter came up and started poking my in the ribs. Every poke hit my nervous system like a jolt of electricity making my whole body jump. I yelled and called them wretched children and we all laughed.

She looked horrified at the story and said, “That’s terrible.”

I tried to explain this was great, not terrible. It was what I had been working toward. They weren’t afraid of it. They were still comfortable around me even while I was in a full blown exacerbation. And they were comfortable enough with it as a part of life to still be able to play and joke around. We had crossed a threshold between worry and acceptance. That was a great day and still a very fond memory.

14 Likes

That might be the single greatest story I’ve read in a very long time @eric.kiser. I hope in addition to your counsel right now someone else stumbles upon that post at the right time for themselves. What a gem.

9 Likes

+1

7 Likes

Your capacity to find the good is inspiring, Eric. I only hope i can have that much grace at any time.

Scanning speech is really just me freezing up because my brain loses the words im trying to use, or my talking hole refuses to make the right noises.
This can lead to gaps in speech, stuttering, clicks or gagging sounds.

It’s also accompanied by mangling words. I get asked to repeat myself pretty frequently. It read really hard to accept when it started, because i had always loved words, i really liked linguistic gymnastics.

But stress makes it worse, so i have to keep it light. I’ll so taking and laugh to reset. Our I’ll feel something idiotic “a new car!” A la rod roddy or a rousing “yabba-dabba-doo!” Are not unheard of.

And if it bothers other people, they’ll need to cope. Because i dont want to talk enough to explain it

Added: that sounds mean, and i don’t like sounding that way. My life is good, and I’m happy i have it. If i lose my ability to see the good, i limit myself to only seeing the bad-and fnck that! My existence is more than speech. It’s more than being locked in a body that I’m losing control of. I’m still me, and i still like being me.

7 Likes

:grimacing:
If it goes on like this, I may find myself logging onto the forum thinking “ok, what sign of our mortality will I be confronted with today?”

When we lived in our previous place, we used to do a yearly collection for a foundation that does research into MS. After we had moved, we found that in our new region, that … “position was already taken”.

As a result, I’m somewhat familiar with MS and its symptoms, but I was unaware of the “scanning speech” phenomenon. Reading up on that startled me, because our team lead (a highly intelligent guy) suffers from a phenomenon that, for an outsider, resembles that pretty accurately, but as far as we know, he’s not suffering from any ailments.

I’ll have to let this sink in. I hope you stick around!

7 Likes

:rofl: :joy: :rofl:

Do you want to learn to play bass and confront your own motality?
Join BassBuzz today!

11 Likes

As the winds blow change into my life, the one thing that won’t change is me loving playing bass. That’s not even a promise, it just is.

Ms Comes in several flavors. Most common is rrms.
Mine is ppms. Meaning the lesions are primarily in the brain. For me, this means a memory like Swiss cheese, speech difficulties and loss of sensation in the extremities. It seems like most everybody who gets ms gets their own custom tailored set of symptoms-they can range from very, very mild to absolutely severe.

So if asked what ms means to me? Prison. Being locked in a body that i don’t have control of.

It also means i gain a new perception of value. I refuse to be bitter or angry. My life is good when i make it good.

I got a new appreciation for what really matters- kindness, love, consideration. Really hearing when listening.
For me, these things are the only real currency.

And, BRIGHT SIDE! Since i have ppms and my brain is the problem, i can officially say all my problems are just in my head!

9 Likes

That’s okay. Some days are going to be like that. I try to keep a good attitude, but stress, heat, and fatigue sometimes wins and I’m all “Fnck these people and their normal walking bullshit!” :rofl:

8 Likes

I’m kinda familiar with that, be it from a completely different cause. My wife suffered from a small cerebral stroke four years ago. As a result, her short-term memory is shot, and she has trouble constructing sentences. Sometimes this is because she can’t find the words, but usually it’s because she gets stuck in her thoughts, and can’t find a way out of them anymore. She describes it as “congestion in her head” – the thoughts are there, but they can’t move around anymore because they’re obstructing each other.

She’s had so many operations in her life we’ve lost count (more than 20), so she already distrusted her body, and now she’s distrusting her own mind, and that’s… not nice.

And yet, she keeps searching for the things she can do, and she manages to savour those. So while I’m merely a spectator when it comes to Bad Things Happening To People, I’m starting to gain some understanding.

It does make me feel unjustly blessed because, despite not having lived a healthy life, I still have all my original parts – none of them have dropped off, and most of them are still functioning.

I guess that’s what makes me lock up whenever I read about somebody else’s health turning for the worse. I can never find the right thing to say.

9 Likes

Man. Again you’re spot on, Eric. I’m a full on believer that attitude sets the tone for everyone. I’m GOING TO be happy. I refuse to let other folks bring me down.

7 Likes

She sounds amazing, Peter. And don’t discredit yourself. We all wish we had the meaningful things to say. Often, just bring willing to hear and realize there isn’t good things to say means a lot.

I get what she’s saying there. And i dont think I’ve heard it expressed better. That’s pretty accurate for how it feels.

7 Likes

I also have been struggling with this lately, however, I think this just shows that this place is more than a forum, and more like a Family. I find this place to be a nice break from reality, but it’s also nice to know that underneath it all, we are all people. And we are treating each other in this virtual world like real people. I don’t know of anywhere else in the virtual world, at least that I have experienced, that does this. Nothing is fake here, no one is tearing anyone down, nothing but love for bass and each other

9 Likes