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NinaP

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Lost a loved one
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GR
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Ptolemaida
I really dont know how to begin what to write. My mum was diagnosed wiith ALS in April 2018 after 4 months of tests and visits to every doctor there is. Finally she was diagnosed in a University hospital. We are a veru close family. 5 kids 9 grandkids. We are in a state of shock. Mum was an active strong never stop woman. She started to complain from the summer, about weakness and not being able to walk long distances as before. Then couldnt climb stairs. Then she couldnt get up from her couch. Then her foot dropped. Her left foot always was weaker since she had back issues. Me and my sister are her caretakers. Its a 24 hours nonstop job. She cant walk now.

Only her right hand works. We carry her around in a wheelchair. We are in a general panic, shock. We cant believe it. We are in denial then despair. There are no hospice or an organisation in Greece that we kmow off. The doctors described ALS as horrific. Anyway its been 4 months non stop of us searching and mum detoriating. I found this place and been reading symptoms and managed to notice the symptoms that we didnt saw then. How she would drink water and then cough. Her behavior being angry and having a bit of fits. We are terrified that we will get it too. I start fearing about myself. My left leg is weaker too for about 4 years now. I now wonder if its from ALS. I have noticed myself slurring words lately and being out of breath while walking, i must say i gained weught since i took leave of absence to care for mum. My sister says is from our anxiety and being so tired. I dont remember when i had a good night sleep the last 4 months. I dont know. So scared. Sad. Angry. Dissapointed. I forgot to write mum is 70 years old with no other medical problem. Im 39 years old. Im scared to even get tested seeing how much mum is going throu.
 
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KarenNWendyn

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Hi Nina,

Sorry to hear about your mom but welcome to the forum. It’s a good source for information as well as support.

It is understandable that you would have health anxiety while seeing what your mom is going through. However your risk of ALS is extremely low unless there is a family history of ALS in other relatives in addition to your mom.

I recommend you start by talking to your general doctor about your personal health concerns.

Meanwhile best of luck with your mom. We will support you as best we can.
 

chally

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wv.
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renick
Welcome Nina,

This forum is a good source to ask questions, and share worries.

Als is a nightmare! No doubt about it.

Taking care of your mum will be an adventure.
remember to quite down and breath from time to time.

Stay strong, ask questions.

Chally
 

wishmobbing

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DE
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I'm so sorry to hear about your mom but glad you found this place. Don't despair, we're here to answer any questions you and your whole family have. Like you said, you're a strong family. You can deal with this together. Lean on each other.

Care for your own health (what you're doing for your mother is very draining) but please try not to worry about having ALS yourself. If the family on your mom's side had cases of familial ALS or dementia it'd be reason to find out more about it.
Gaining weight sound far from any ALS related symptom, maybe this can assure you.

Anxiety and lack of sleep can grind you down pretty quick. Your sister is spot on. I hope the two of you take turns and you can both take some time off to do something relaxing or distracting. Try to get many more friends and family involved. It doesn't have to be taking care of your mom's very specific needs. Anyone could chip in to run errands, go grocery shopping, do laundry or cook some good meals. Any task you think about "I can do this myself, no biggie" is a task someone else could help you with.

Come here whenever you want, to ask, read and speak your mind. This forum can be a library, diary, therapy and sometimes just a place to hang out with friends while you can't get out of the house. Welcome!
 

NinaP

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Messages
145
Reason
Lost a loved one
Diagnosis
04/2018
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GR
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KO
City
Ptolemaida
Thank you for the responses. Sorry for how harsh ny post sounded. Saying ALS is horrific to people who are face it is stupid. Again my mind is a mess. I start questioning everything. I live with my mom, had to come back cause my dad was sick for 6 years from heart failure. Doctors said ALS could have been triggered by diet or medicine or weather or whatever. I keep trying to remember what we have been eating. Mum and I we did the mediteraneaan diet, fresh fruits and olive oil and goid quality ingredients. Always good food and focused. I keep wondering if im gonna be sick since we are eating the same stuff.
No history of ALS in her family. No dementia. Her big sister 96 still lives and walks and her other sisterr 82 the same. Her mother died at 94. I dont know ehat to say. I started praying it will end soon and mum wont suffer.
 

wishmobbing

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Messages
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There are many discussions here what could trigger ALS. It's interesting to research. But dangerous if you start looking for a mistake in your or your mom's lifestyle. Your fine mediteranean diet surely isn't responsible (please eat a couple of those amazing big red-green tomatoes for me), many old relatives proofing it. The family history sounds very good!
You're not going to be sick with ALS and please don't get sick from worrying.

Calling ALS horrific isn't stupid, it's an obvious truth. Many here call it The Beast. It hurts people and it wreaks havoc all around it. We all here face the beast on a daily basis and horific isn't the worst ALS has been called here.
 

Wren

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Joined
Jan 27, 2016
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Reason
CALS
Diagnosis
01/2016
Country
US
State
Florida
City
Palm beach gardens
Hello ninaP, I’m so sorry that your mom is suffering from this disease. I’ve spent a lot of time in Kozani and loved it there with some of the best people in the world, but I know getting help is difficult there. You are feeling a lot of emotions which can cause you to get sick, but not with als. I come from the same kind of close knit family and their pain is your pain. My husband has bulbar als and I’m his care taker. I’ve also taken care of my dad who had Parkinson’s and a brother with a fatal cancer. Please, please take care of your self so you don’t get sick. I found by keeping life simple has helped a lot. I know how hard the women in Greece work to keep everything smooth and perfect, but there will be time for that latter. Sit down and just be with your mom and enjoy her. I wish I could hug you extra for all that you are going through...
 

NinaP

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Messages
145
Reason
Lost a loved one
Diagnosis
04/2018
Country
GR
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KO
City
Ptolemaida
Thank u Wren. Cant believe you havd spend timd in my territory. Im from Ptolemaida. Things are so difficult. I cant imagine how you mamaged. Mum is getting worse by the day. The expenses are huge, i spend my salary mums pension. My sister comes in the morning to help and then i have another girl that i pay to come help. The mental pain is huge. Seeing mum.like this. I cant believe it yet. My younger brother cant come see mum everytime he was coming he was crying with desperation. Im scared ill get sick too. Trying to get my mind off. Is there a link to tbe triggers thread? I keep sayong myself dont read anything forget it it wont happen to me or the rest of our family yet we are so scared. Mum doesnt know much apart from its a difficult illness. She still thinks she can fight it. Really so resigned to everything.
 

Nikki J

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Mar 22, 2012
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8,907
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04/2014
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I am sorry about your mum. It is difficult and terrible to see this in a loved one and caregiving is a very hard job even though you are doing it as a gift of love.

You need to let go your fears for yourself. Your risk of ever getting it in your entire lifetime is exceedingly small - a child of someone with sporadic ALS which means not familial has only a smidge higher risk than the general population and ALS is considered a rare disease.

The triggers threads would not helpful to you. They are mostly people looking for a reason why this terrible thing happened to them Perfectly understandable but not scientific

What do we know? Don’t smoke, avoid situations where you might get repeated concussions ( like playing professional soccer) don’t swim in water with blue- green algae and don’t join the military as US veterans at least get ALS twice as often as non veterans. Otherwise eat healthily as you have been, exercise moderately and generally do all the things you are advised for a healthy long life. You clearly have some good genes in the family with those long lived relatives
 
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NinaP

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Joined
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Messages
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Lost a loved one
Diagnosis
04/2018
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GR
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KO
City
Ptolemaida
I keep noticing new things on me. I cant cry as i used to and when i do my neck hurts. Also my neck feels tight. Is it my idea? Is is one of the symptoms?
 

Nikki J

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Messages
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Reason
PALS
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04/2014
Country
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MA
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If you want to discuss your symptoms kindly start a thread in the Do I have ALS subforum and adhere to the posting rules you will find in the Important thread read before posting.

You may post out of that sub forum on a new thread if you need to talk about your mother and her issues

I am closing this thread
 
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