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NinaP

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First of all i want to apologise to Nikki i think my questions kinda angered her? At the newly diagnosed thread. I have searched so many sitrs but every site is so general apart from here.

I want to ask the caregivers here were you afraid you are going to be sick too? Or you got sick? I have been having some symptoms like i mentioned on the other thread, i have been slurring some words/using other words while i wanted to use others. Lately also my neck is bothering me and when i cry it kinda feels tight/hurt. Mum is getting worse by the day. I dont know what to expect everyday. Our next doctors apointment is in june 16 but its a 3 hour drive and mum is no shape of enduring such trip. Greece is years and years behind. I ask mysekf does it worth to take her? She is gonna get worse.

I think i have passed the anger phase and now im resigned to what is coming. Feeling very tired. Not getting any sleep apart a few hours. Is it possible the trigger that made mum sick is gonna make me sick too?
 

Jlynn

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You don't "catch" ALS.
 

wishmobbing

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I never worried about catching ALS. The risk of getting ALS is so incredibly low. Don't waste your time and energy to ask questions about your symptoms. How you're feeling is quickly explained with caring for your mom, the immense stress of sleepless nights, helplessness and desperation. I had lots of colds, lost conciousness and killed two teeth in the crash, had a cute little nervous breakdown and my shoulder hurts. This much stress is just isn't what humans are cut out for. It feels like more than you can handle. It is more than anyone can handle. The incredible grief for your mom is right there, it can weigh you down.

Don't additionally burden yourself with health anxiety, asking again and again about symptoms in search of the perfect horror. If you don't respond to experienced people reassuring you, you'll be treated like others looking for a diagnosis here. Nikki kind of banned you to the DIHALS subforum for a reason. It's an anxiety ridden pattern that will get you nowhere fast. There are fine people on this board who deal with this every day, it might shorten their fuse after a while.

If you don't believe the people here, seek help from a neurologist that there is nothing neurologically wrong with you. Better yet, talk to your doctor about stress and how you are feeling. Therapy is helpful but might be too hard to organise for a CALS, some have good experience with anti-depressants. Ask around. Just don't assume that you will have the fate of your mother.

You are very much alive and you can and do make a huge diffence in your mom's life. Be strong for her and let us help you be strong.

You're very welcome here as a CALS. Ask about your mom's disease, what to do now, how to deal with your stress. Brainstorm with us how you could get better medical treatment, how to reduce stress, get family involved, find some time for yourself (it's kind of a running gag but it might just be done). Ask very specific questions, it's also the small stuff like maybe constipation that can ruin a PALS everyday life.

You can actually use being useful to get out of your head. Try to find solutions that will make your mother's life and your own more comfortable. Don't be afraid to ask for help. If you have tasks that can be performed by another person, ask that person to help you, ask them to help your mom. Many people want to help and just don't know how. Are there friends and family that could do the grocery shopping for you? Maybe they won't even take your money for the stuff they got. ;)

Depending on the health care system this disease can be a money drain. Do you have to pay for equipment out of pocket or will insurance pay for many helpful things?

Let's think about ways to get your mom to a good doctor. Our knowledge here of the greek health care system is non-existent, I'm afraid. 3 hours drive are exhausting and you're right about seeing a problem there. Is it 3 hours in each direction or is it the 1 hour 40 min that gets you to Thessaloniki? Is another qualified clinic closer by? Is this the clinic where see was diagnosed? Can you get more information there where to find help?

You can list what your mom is still capable of doing and what equipment you already have. You mentioned your sister and you carrying her around in a wheelchair. Do you really carry her around because of stairs? Or did you just mean a manual/push wheelchair? Does your mom have enough core stability to sit upright? Does the wheelchair tilt?
What kind of bed does your mother sleep in? Can you adjust the back to make breathing easier. Even if you won't be able to get an adjustable hospital bed you can use loads of cushions, blankets and towels to make your mom more comfortable, you can find Youtube tutorials on patient positioning.

Okay, I feel like I'm rambling here. I'm sorry if I trow a bunch of questions at you. You probably know all that. I just don't want you to go under.
Stay strong!
 

ShiftKicker

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Nina, you did not make anyone angry. It's really important to separate your own health concerns from the subject of caring for your mother- boundaries are paramount.

If your health concerns are so present as to be preventing your ability to discuss care for your mother without bringing your own health into the conversation, it's important you seek medical care for yourself too. They are two separate concerns, and it's important for there to be a separation. Particularly as your own health is important too and deserves its own conversation apart from your care for your mum. Self care is one of the biggest tools in the arsenal that caregivers have. Visit with a doctor and make sure everything is ok with you and talk to them about your level of stress. Caring for a parent with a complex and burdensome disease is incredibly stressful and you need some care yourself apart from you mum's.
 

lgelb

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Nina,

Wish asks good questions about the clinic, and, it is true, unless your mom gets something concrete out of it, there is no point in going. Does the clinic have email if you need equipment/have questions? Yes, she will get worse and you will need equipment to help her, so you will want to keep a relationship with some clinic that can expedite that.

As others have said, ALS is not contagious nor traceable to a single environmental cause that we know. Get some sleep and exercise, as these are the best thing for what you describe. Don't let your fear and anger waste the good times, even just sitting together, that you can still have with your mom.

Best,
Laurie
 

affected

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I don't think she is worried about 'catching' ALS, it is her mother, she is worried about it being familial and there is a big difference.

I know that many of the adult children who are CALS that I support in Australia have a time of real fear they will end up with ALS too. It is very natural. Please do talk with your doctor and get an appointment for yourself so you can be examined and reassured.

Remember you are a full generation behind your mum, so you will not start showing ALS at the same time as her, it doesn't work that way.

I hope that being examined and having a good talk with your doctor will help put this fear behind you so you can start really supporting your mum. I also hope you can find medical help for your mum a lot closer.
 

NinaP

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Hey guys. I want to ask if anyone had any symptom related to rib cage? All.of a sudden my lower left rib cage is very obvious. I think im going mad seeimg all this. I remember my mum when she started losing back musle her rib cage had became far more obvious.
 

Atsugi

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I never heard of ALS starting with a change to the rib change. Doesn't make sense.

OF course, once a patient is far along into ALS, the torso could change.

To answer your original question: After my PALS died, I sometimes worried that I would get it, but I brushed those feelings off because I knew I was just imagining things.
 

NinaP

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Wanted to give a small update. My slurring/stutter has got a bit worse and my niece today told me that my voice sounds different hoarsed. I said why you say that? I just noticed she said. I keep telling myself you guys are right and i should ignore my fears but im seriousky thinking to find a good neuro and go check myself in secret. Dont want my family get upset. Problem is i need to travel to another city and i have to use a believable excuse.
 

NinaP

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Re: Hoping for the best

Sorry but from what i read here from all of you guys, when you have sore throat and tensed tongue and stuff that points away from ALS? Last night i mentioned my symptoms to a friend doctor about my sore throat and my slurring and my tongue burning at the tip and i feel my whole mouth warm and im burping and stuff and she told me that its possible Gerd from stress and irregular sleep/eating habits. It kinda reassured me a bit.
 

Nikki J

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Hi I have moved your post here. I understand things are confusing but we want you to discuss your ALS concerns here.

The thread you posted to had someone reporting a comment from a neuro that sounded very strange to us and as you saw the poster was advised to seek another opinion.

Your doctor friend sounds very sensible and I think she gave you great advice
 

NinaP

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Omg im so embarassing.
 

Nikki J

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Don’t be embarrassed. I know it is confusing. You have 2 reasons to be here and there are different rules for each situation. When you are Nina caregiver you can post your concerns about your mom and your stress and worry in the CALS section or if you had a general question like how do you use a piece of equipment or do x task post in the general section

If you have advice based on your experience with your mom or want to offer support as a CALS you can post on other people’s threads.

Nina I am worried I have ALS needs to stay on this thread. It helps people to see everything you say about the worry in one place. We also like to keep each thread in this subforum focused on the concerns of the original poster

I hope this makes things clearer. It is confusing to wear 2 hats here when we have these posting rules. I hope you have by now read the sticky ( important post) read before posting at the top of this subforum. There is information that may be helpful with your concerns The posting rules apply to Nina worried about ALS not Nina caregiver
 
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NinaP

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Hey guys. Just wanted to give an update. Slurring seems to get so much better. My voice too getting back throat not sore anymore. Generally im tired but sleeping better. My back shoulders are tensed but i blame being tired. My sister reminded me that two years ago one of our cousins died with no obvious reason. He got in the hospital couldnt breath and such and died from respirate failure. I wonder if it was ALS. He was my mums nephew from her brothers side. Anyway thats all.
 
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