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@dealingwithmnd-blog
My family has lost 9 to hereditary ALS. I was tested positive for the gene. Just looking around tumblr.
Really sorry to hear this news... It must be even worse knowing the disease so well already. If ever you want any advise or a chat feel free to drop a message any time and I will do what I can to help. I hope you are able to stay at least comfortable during 2015, and I send my love to yourself and all the family
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
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Sorry I haven't posted on here for a while. I know how tough the Christmas period is for a lot of people myself included. If anyone fancies a chat anytime just drop me a message it might do me good too.
Hi ive watched your video and can understand how you must feel, my mum was diagnosed with motor neurone disease about 8 years ago and ive been her carer. Its been tough and i wouldnt wish this disease to anything, as a carer it has been a long road and mentally and physically draining. I have never giving about though, i been looking and searching for answers and im hoping ive found something that could help others, bumped into a chinese herbalist that deals with auto immune and bone marrow.
Hello I'm very sorry to hear about your mother. It's a terrible disease, and a constant struggle. When my dad first got diagnosed we considered taking him to other countries where there is more research but because he had the quicker version of MND he decided it wasn't worth doing. I think taking your mum to clinics is a good idea though as they're close by, and it certainly can't do any harm. Just take it day by day. Live laugh and cry together and always tell each other you love one another. Every day. Make sure you live for the moment. You're going through hell and you're looking for the best moments in it, and that's the perfect way to deal with the situation. Wishing you all of the best, and hoping your family can remain strong every day
Coping with a chronic, progressive illness is one of the biggest challenges anyone can face. Despite our best efforts, it’s extremely difficult - and unrealistic - to stay positive all the time. And that’s okay. Giving yourself permission to feel sad, angry and upset is very important. If we stifle our emotions, they can become even more overwhelming, which can make an already difficult situation worse.
Mental Health and ALS: Staying Mentally Strong After an ALS Diagnosis - Breakthrough ALS Blog (via adozi)
* (With notes from me!)
Best advice I’ve found. Emphasis and links are mine. Some edits, too, to make it less US-centric and ALS Association oriented. Article from ALSA Here, advice from Will Hubben, who lived with ALS for six years.
1. Be compassionate to yourself. If you are like me,...
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
My dad suffers from als aswell and I just wanted to let you know I admire you and I think your a very strong person. Both me and my dad aren't taking the disease very well, do you have any coping strategies both me and my dad could use?
I’m so sorry. How long has it been? It took me a long time to get here. Thanks for saying that. I hope i can help.
Be kind to yourself, because it’s really hard. Take it one day at a time. Don’t look too far ahead, and try to stay positive. I know it probably seems impossible. These are things i recommend :
Ben Terry’s youtube channel. He also lives in the UK, He’s young, and his dad has MND. https://www.youtube.com/watch?v=Ohxyrhm66J0&list=UUJLnZGjVDHvVtVk-wDY1xwg.
Therapy and antidepressants
This is the guide we were given my first clinic : http://mda.org/publications/mda-als-caregivers-guide
ALS from both sides http://www.alsfrombothsides.org/. She’s had ALS since 1985, and is on a vent, just rolling around, living life.
And join ALSforums. The people there are really helpful and supportive.
Take care,
Ashley
A very good question and a brilliant reply, definitely worth following her blog
If you don't mind me asking, how long did it take for you to get diagnosed?
Hello buddy,
I personally don’t have MND but my father has.
I’d estimate that it took a month or so to get diagnosed but that’s just a guess. However, they believe he had MND for possibly a year or so before being diagnosed, but the symptoms weren’t as bad before then.
Hope this answers your question. If you have any others ask away
Ah thanks for answering. I’ve been going through some troubles for about 8 months and the doctors weren’t able to figure out what was wrong. It finally took the physical therapist to tell me I was showing signs of my upper motor neurons being off. I was starting to get annoyed with all these doctor visits and no answers, but I suppose I just need to hang in there and be patient.
I wish you the best of luck, hopefully it’s nothing serious. The not knowing part is a really bad time, and is really stressful. I hope things work out okay for you mate
I really appreciate that, truly. I think I can deal with whatever happens, just more concerned about my family worrying about me, you know? Still, kind words really help since very little know about my situation so I don’t really get told anything like this. So again, thanks.
Sorry for the late response buddy, How have things been for you in recent times? Hope things your end have improved and yourself and your family are in fair spirits. Take care mate
Don’t worry, I really appreciate it. I don’t really like complaining, so I’ve been doing fine for the most part. Just enjoying my little break from any sort of doctor while my physical thetapist finishes up my report. Thanks a lot again for the positive words. I hardly ever hear them, so it really means a lot.
No problem mate if you ever need any advice or simply a chat never hesitate to send a message. Glad things are going not too bad at the moment, wishing you all the best with the tests
If you don't mind me asking, how long did it take for you to get diagnosed?
Hello buddy,
I personally don’t have MND but my father has.
I’d estimate that it took a month or so to get diagnosed but that’s just a guess. However, they believe he had MND for possibly a year or so before being diagnosed, but the symptoms weren’t as bad before then.
Hope this answers your question. If you have any others ask away
Ah thanks for answering. I’ve been going through some troubles for about 8 months and the doctors weren’t able to figure out what was wrong. It finally took the physical therapist to tell me I was showing signs of my upper motor neurons being off. I was starting to get annoyed with all these doctor visits and no answers, but I suppose I just need to hang in there and be patient.
I wish you the best of luck, hopefully it’s nothing serious. The not knowing part is a really bad time, and is really stressful. I hope things work out okay for you mate
I really appreciate that, truly. I think I can deal with whatever happens, just more concerned about my family worrying about me, you know? Still, kind words really help since very little know about my situation so I don’t really get told anything like this. So again, thanks.
Sorry for the late response buddy, How have things been for you in recent times? Hope things your end have improved and yourself and your family are in fair spirits. Take care mate
Do you find the MND association helpful? Where do you find the most sense of community related to MND? I'm wondering Youtube vs tumblr vs etc... Thanks so much.
I personally don’t look much on the official MND site, but my mum does. She finds the forums really useful for advice, and just being able to relate to other peoples struggles. For me personally, I find the Facebook group ‘weekend wipeout mnd’ a good social support group for myself. It has members that suffer from MND and also carers and other people affected in other ways. I love their sense of community. As for my mum she finds the MND site most useful as she doesn’t have Facebook. I guess it’s down to preference. Hope this answered your question okay feel free to ask anything else :)
I’ll have to check out that Facebook group. Thanks for answering. I find the comments on your youtube channel very uplifting.. I don’t know if that’s the right word. It’s just a nice change from the usual trolls. I shared it with ALSforums, and they liked it too. Take care, Ben.
Sorry for the late response, I'm glad you found the answer useful and thank you for sharing the video :) Like you I love the people my videos attract. No haters, no spiteful trolls, just decent honest people in the same difficult position looking to talk. That's rare for YouTube! I hope things your end are as okay as what's possible, wishing you all the best x
Do you find the MND association helpful? Where do you find the most sense of community related to MND? I'm wondering Youtube vs tumblr vs etc... Thanks so much.
I personally don't look much on the official MND site, but my mum does. She finds the forums really useful for advice, and just being able to relate to other peoples struggles. For me personally, I find the Facebook group 'weekend wipeout mnd' a good social support group for myself. It has members that suffer from MND and also carers and other people affected in other ways. I love their sense of community. As for my mum she finds the MND site most useful as she doesn't have Facebook. I guess it's down to preference. Hope this answered your question okay feel free to ask anything else :)
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
If you don't mind me asking, how long did it take for you to get diagnosed?
Hello buddy,
I personally don't have MND but my father has.
I'd estimate that it took a month or so to get diagnosed but that's just a guess. However, they believe he had MND for possibly a year or so before being diagnosed, but the symptoms weren't as bad before then.
Hope this answers your question. If you have any others ask away
I know how i felt when i was diagnosed. It was awful, and i don’t want anyone to feel that way. Of course, nothing can stop ALS (aka Lou Gehrig’s disease, or MND across the pond), but here is a list of things i’ve come up with that i think will help you cope with it better.
You are not alone....
Sorry!!!
Ok so not been so organised lately and forgot to check Tumblr and didn't notice any messages :( anyway I will be keeping a closer eye on Tumblr for now on, so anyone please message me anytime for a chat, I won't be so useless for now on, honest!
Hi there, my name is Lorraine and my dad was just diagnosed with having MND a few days ago, I was wondering how you would suppose helping my dad out, the neurologist told our family my dad he has had MND for about a year now, he has lost a lot of his mobility on his right side and his respiratory system is already badly effecting him, causing him to retain too much carbon dioxide, I love the idea of your blog, thank you for your time.
Hey Lorraine, I'm reeeeeeeeeally sorry for the late reply, haven't checked Tumblr for a long time until today so not been aware of any messages :( will be keeping a close eye on it for now on though so keep in touch.
I'm so sorry to hear about your dad, it's a very tough road ahead but you'll find ways of adapting to the newer situations, as will your family. I'd suggest keeping in touch with people who can relate to what you're going through. I found I was getting frustrated with friends because they couldn't really understand what I was going through and my family. I find talking to people who understand me helps me the most. If you ever want to chat message me any time and I'll reply (this time!) keep in touch, I hope yourself and your family were able to make the best of Christmas under tough circumstances... Sending my love to you and your loved ones, take care
hi um, I'm Amy, I'm 16 and my mum got diagnosed with mnd about a month ago and she's starting to go downhill. I don't feel like anyone understands what it's like and I feel like I annoy my friends. I'm finding it really really difficult and I can't seem to find anyone who shares in this experience and I feel really alone. I was wondering if you have any advice? thanks x x
Hey Amy, I am so so so so so so sorry for the late reply, haven't really checked my Tumblr account until now, but I'll be keeping a good eye on it for now on :) I'm sorry to hear about your mum, how is she currently?
I struggled/struggle with exactly the same kind of feelings. Unfortunately unless someone has been through the same thing or something similar they won't truly understand what we go through on a daily basis. I found the thing that helped me was having contact with people who know exactly what myself and my family are going through. I can compare experiences and get good tips that help me. As for yourself feel free to message me any time, and I'll be the person there for you who can understand you. I'm so sorry again for being a useless bugger, I'll be keeping a eye on Tumblr. Message me any time. Sending my love to yourself your mum and your family xxx
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch • No registration required • HD streaming
Our mental world
Our planet is an infinite adventure and source of information. The hardest part of life is discovering ourselves and the routes we choose to discover and participate in
MND Facebook
Spoke to a lovely lad via YouTube who sent me a link to a Facebook page called 'Weekend Wipeout MND' well worth joining, to those of you with Facebook! Everyone on there is extremely friendly and brilliant and anyone is welcome to join :)
