Brainstem Lesions slowing my life to a crawl

[22cyclist]

I have many of these, and as my neuro-immunologist so kindly explained to her resident in front of me (like I have no idea about anything about medicine), this is NOT a good place to collect these...yeah well too bad for me for now I guess. She said this is why I am falling asleep during the day despite my Amantidine. I have tried all of the other stay awake drugs. I fell asleep while driving, fortunately I was only going 25 mph, was on my road in a subdivision, hit a mailbox (a concrete mailbox), that totaled my car, my airbag deployed and it bent the frame on my Acura TSX. Thank goodness it was not a person!!

So, I went out and bought a new car, an Acura with the lane keeping, drive by wire, brake assist, and it stops on its own...trust me its done it for me when I have tried to make an evasive maneuver but instead it is screaming break break break at me and stopped dead in its tracks. Its a little weird, you are trying to drive on a curvy road and think you are in control of the car when all of a sudden you feel the car pull itself to the left or right correcting itself for the lane control, its nice but weird.

Now they have told me I can't drive. I am a danger. I have to agree right now. Its just one of those things you have to give up. One more piece of independence. I mean GOOD GRIEF! I am not that old!

I am SICK to death of this disease.

[Tia1]

I'm so sorry for that you have suffered another loss due to this disease. I can only imagine how this loss of independence feels, thank God there is Uber and Lift as options to get around. These definitely sound like safer options.

I think that eventually you will adapt to this new situation. I'm sorry about those brain stem lesions. I have new lesions in my frontal lobe and am struggling with focus, motivation and follow through. Everything is a struggle for me right now.

It is always something!

I'm glad that the mail box took the brunt of the accident and not you or someone else, that is a big blessing!

[Seasha]

I am also sorry to hear the news, 22cyclist, and join in with others who are sick of this disease!! It's like a vampire for many of us. I'm glad that you and others weren't hurt in the accident. Where I live we have in place a transit bus system that drives around for handicapped people. Do you have that where you are? Family members to help?

Again, I'm sorry. :-(

Hang in there and know I'm thinking of you.

[REG53]

Hey 22cyclist, I am also sorry about the brainstem lesions, you have been thru a lot. Having to give up driving has to be tough.

I have been wondering how you were doing and I hope you are able to find transportation so you can go out and about.

Hope you feel better soon.

[pennstater]

It is nice to see a post from you, but am so sorry the reason you had to post. I know I have been fortunate to date, but explain to people MS feels like premature aging at times. We are forced to deal both physically and emotionally with things healthy people deal with in their 70s, 80s, and 90s.

I am really glad you were not injured. Sorry that you have to deal with this new normal.

[22cyclist]

I am also sorry to hear the news, 22cyclist, and join in with others who are sick of this disease!! It's like a vampire for many of us. I'm glad that you and others weren't hurt in the accident. Where I live we have in place a transit bus system that drives around for handicapped people. Do you have that where you are? Family members to help?

Again, I'm sorry. :-(

Hang in there and know I'm thinking of you.

Thanks Seasha and everyone else. I live way out in the country about two hours away from my doctor and hospital (MS center). There is no transpertation out here in NC. An uber would cost and arm and a leg so I hire someone to drive me in my car and bring me home after my appointment. It is working for now.

[Jules A]

It made my day to see you posting although I'm sorry things are so difficult.

[Carolinemf]

Hi,
I feel for you with your loss of independence as well as the worries you've been coping with.
Having your own wheels in a small town miles from things you need to do is so much better.

I've had many episodes of fighting to stay awake at the wheel and more often than not i have only been driving a few minutes- just can't stay awake! Had several near misses and had to cut back on work. I have started needing a driver for distance trips too.

I'm not 50 yet and i can remember looking at my Mum weird for saying she didn't like driving at night - in her 60's. It's scary how much older i feel than others older than me.
So ditto to- I mean GOOD GRIEF! I am not that old!
Caroline


I am SICK to death of this disease.

[Thinkimjob]

Really made my day to see a post from you! (I do worry 🙃.)
I've nearly reached the end of the road so far as driving is concerned, pun intended.
Used to be easy and fun. Now, like so many other formerly simple things, it takes intense concentration.

The old question about whether you should stop your elderly parents from driving was, "Would you let them drive your children around?"

Of course, it's one thing when you're 85, and quite another when you're 47.

MS sux, big time.

[rdmc]

Brainstem lesions can also control your sleep patterns. Have you had a Sleep Study? A lesion could be causing you Central Apneas during your sleep time, and that means you're not really getting good sleep, so you doze off during the day.I have the brainstem lesion issue, and I did a sleep study (I changed neuros a few years ago and he runs all his MS patients through a sleep study.) So long story short, I got a BiPap, and when I wear it overnight, I'm not dozing off during the day. If you haven't had one, it's definitely worth it, IMO.My medulla lesion is rather large and causes all kinds of weird disturbances with autonomic issues. But I've been very pleased with the pharmaceutical options that we've worked out to counteract the symptom, i.e. meds for heart rate, bp, SVT, machine for respiration. Each one has been able to be "more controlled" with the right med.i hope you can find a solution.

[22cyclist]

Brainstem lesions can also control your sleep patterns. Have you had a Sleep Study? A lesion could be causing you Central Apneas during your sleep time, and that means you're not really getting good sleep, so you doze off during the day.I have the brainstem lesion issue, and I did a sleep study (I changed neuros a few years ago and he runs all his MS patients through a sleep study.) So long story short, I got a BiPap, and when I wear it overnight, I'm not dozing off during the day. If you haven't had one, it's definitely worth it, IMO.My medulla lesion is rather large and causes all kinds of weird disturbances with autonomic issues. But I've been very pleased with the pharmaceutical options that we've worked out to counteract the symptom, i.e. meds for heart rate, bp, SVT, machine for respiration. Each one has been able to be "more controlled" with the right med.i hope you can find a solution.

I have not had a sleep study and what a great idea! I will ask about that through my chart. The online board to reach your provider and check your test results. I will for sure do that. I am glad to be back posting! I missed everyone!

[Carolinemf]

You've been missed as well

[swilliams1]

Mad also

[ QUOTE=22cyclist;1501630]I have many of these, and as my neuro-immunologist so kindly explained to her resident in front of me (like I have no idea about anything about medicine), this is NOT a good place to collect these...yeah well too bad for me for now I guess. She said this is why I am falling asleep during the day despite my Amantidine. I have tried all of the other stay awake drugs. I fell asleep while driving, fortunately I was only going 25 mph, was on my road in a subdivision, hit a mailbox (a concrete mailbox), that totaled my car, my airbag deployed and it bent the frame on my Acura TSX. Thank goodness it was not a person!!

So, I went out and bought a new car, an Acura with the lane keeping, drive by wire, brake assist, and it stops on its own...trust me its done it for me when I have tried to make an evasive maneuver but instead it is screaming break break break at me and stopped dead in its tracks. Its a little weird, you are trying to drive on a curvy road and think you are in control of the car when all of a sudden you feel the car pull itself to the left or right correcting itself for the lane control, its nice but weird.

Now they have told me I can't drive. I am a danger. I have to agree right now. Its just one of those things you have to give up. One more piece of independence. I mean GOOD GRIEF! I am not that old!

I am SICK to death of this disease.[/QUOTE]

imoved to CO with my daughter and son and i was informed no more driving for you it not safe haveing hard time with it but i know they're right

[Kimba22]

I'm sorry Lisa and swilliams1. I also no longer drive. My kids were both with.me (and still pretty young at the time) when my right foot decided not to work when I went to brake, and ended up on a neighbor's front lawn. Thank goodness was going less than 25 mph. when it happened, no one was injured and I didn't plow into the house! Live by a school, and people are using that sidewalk all the time. Scared the heck out of me. I've fallen to sleep while using electric w/c. Plowed into a parked car once while with my family. Big ouch to my knees woke me up. Both car and I OK, but family just couldn't understand how I could just fall asleep like that. To this day, still like to brIng it up. But at least wasn't driving a car.

Not fair to loose this independence too.

[KatieAgain]

Lisa--so sorry you have to deal with these issues. I certainly can relate...brain stem lesions can just suck the life out of you. Just take it one day at a time Darlin'. 🌷🌷🌷