Ginger83

Hi Andy,

Mnd won't leave my family alone, that's what has me here. My brother being the youngest to be affected at 32yrs. I actually thought when u joined this forum you were him but no I can see your in a more positive place than he is right now.

I've been stalking this forum about 5 months now although I was no stranger to MND I just needed whatever advice there was on slowing this thing down and stories of hope I guess.

How are you doing lately? I can't help but pick up your positive mental attitude.

Thanks for taking the time out to say hello.

Dee

Sorry Andy, svc = service. I tend to shorten things as I use eye gaze to type, so take short cuts!
Good for you being on the Ad Campaign! It’s a great idea using young people, the previous lady was also young. I rarely go to Clinic now, last time I waited 2 ¼ hours to be called!!
I am so, so glad your progression is slow Andy. One year after my diagnosis, I was in a wheelchair, voice really bad and had a peg tube, so you’re doing very well. I hope you’ve many years yet with your kids.
Keep healthy – that’s important. Take care, Ells.

Hey Andy, I'm doing well happy Easter for this weekend, do you have any plans ? My sister and two young girls are coming, it should be fun. How are you going?
Kylie

Hi Andy,
Thanks for getting in touch. I’m keeping well, thanks – remaining fairly stable, that’s the best we can ask for, right! I’m due a visit from the HSE wheelchair svc next month to get a new wheelchair, as my current chair was 5 y.o. when I got it and is about to give up!
How are you doing? Do you attend clinic often?
Take care,
Ells.

To be honest I dismissed ALS until the last month before being diagnosed , I was actually nursing a Patient with it when the penny dropped. If you search vitamins and supplements on the forum or google there's more info but magnesium & tonic water are great for cramps. Vitamin B's , C, D, E & CoQ10 are considered useful, some are Nuero protective, one is for oxidative stress in ALS , some help muscle strength, others are free radical scavengers that get rid of toxins, there's more out there I see mentioned that I don't know about! Def helps me with cramps & energy if nothing else. Worth having a look when your ready, meantime take care. Kylie

I have done that test but never asked what it was. I do remember them saying 98% which i am grateful for. Its fab you got to pay for your renos, a big relief i'd say. I was able to withdraw funds from my pension early so they should go a long way towards ours.
Due to your nursing background did you know about ALS/MND? I have to admit I didnt really know what it was. Yes I would be interested in knowing about helpful vitamins, do you take any?
Andy

I think the US call it pulmonary function test we call it respiratory. U take the deepest breath possible and blow as hard & long as you can into a mouth piece. I do feel lucky with family despite everything & I managed to pay for the renos at least & made dad feel helpful (he built it) do you have a good support network ? Congrats on the wedding that's fantastic! I bet the kids at that age would keep u busy I take baclofen and started diazepam to relax my neck at night. It's great u could retire especially to enjoy your kids and take it easier. I left nursing just after diagnosis, there wasn't much I could do safely. If you're interested there's a lot of vitamins etc that seem to help, quite a few take them

Hi Kylie, I'm delighted you can still walk and talk. I'm not familiar with all the terminology, how do you know your lung function is 33%? Is there a test for this?
Its pretty cool you have close family, they must be a great help to you.
My kids are quite young, 3yrs and 18mths but they keep us very busy, we got married at Christmas and I've retired from work.
Are you on much meds? I take Rilutek for ALS\MND and baclofar for muscle cramps.
I hope you are keeping well, tomorrow is a new day
Andy

I just realised I may not have answered your question. I can just still walk but not for long, my speech is mostly understandable, I can still eat/drink although my upper strength makes feeding myself hard and despite my lung function being 33% I still don't need a bipap. All in all 3 years post diagnosis I'm pretty grateful

Your msg didn't show up on mine this time but it did on yours thankfully. It sounds like you're progressing slowly that's great news, limb Onset tends to be a lot slower! We went all out as I was still independent mostly & have two cats that don't like mums dogs or cats . We did bthrm, bedroom , kitchenette, lounge and a spare area for my nieces aged 8 & 11 now. We also did a 8x8 m enclosed garden for me & cats. We're in rural country Australia , 3 months in they were playing with a deadly snake! Bloody cats ! My heart goes out to you having 2 small children, I know what you mean though my nieces bring so much love,comfort and entertainment How are you coping otherwise? I learnt quickly to take one day at a time and not look too far ahead unless it was to plan something fun with friends & family . I can't believe they kept you in 7 days, that would've been torture for you. I'm like a caged lion in there hehe. Hope you're Staying strong and this msg reaches you.

Sorry about that, what renovations did you do. We are have a ground floor bedroom and bathroom built.
I believe I have symptoms back as far as sept 2013. It was my doctor that spotted a muscle in my right hand wasted and twitching in my arm. I was in hospital 7 days having tests before they broke the news to me. Totally shocked. I'm not doing too bad, I can still walk and talk. My kids keep me positive.
How about you?
Andy

Hey andy, no sorry I didn't get your message, I hope the renovation is going well and isn't too stressful
Kylie

Hi Andy, thanks for the reply. For the moment everything is going fairly smoothly 'touchwood'. That's great that you're getting renos done early we did too and it's made life easier for me and mum yes it certainly does suck getting it young it would've been great to squeeze another decade or two in before beginning ALS life. For me my journey began just after I turned 28 when I noticed I was finding it harder to get off the couch , my shoulder kept hitting door frames from swaying when I walked, and my arm / hand was twitching like crazy. 11 months later I was diagnosed, never did I imagine it would be what it is. How about yourself? How did this begin for you? As for my posts I'm certain they're all gibberish! Anyway hope to hear from you

Hi ginger I'm 32 as well and would love to have a chat with another pal my age if you're up for that

Hi Ells
Just wondered how you are doing. Msg me if you ever fancy a chat.
Hope all is well, Andy