New? Introduce Yourself - Say Hello

[Sadbunny]

Hi everyone

Hi everyone,

I'm the broken hearted daughter of a man in his "final stages" of MND. Diagnosed in January 2010 but symptomatic for a while prior. I am completely helpless watching him and he is just waiting to take his leave of this world now. Hoping to get to know people here and I just suppose to find some acceptance. Friends & colleagues know my Dad is "sick" but they don't understand. They cannot imagine just what that means for him and for us watching him. I wouldnt wish this horrible, rotten disease on anyone.

Sending good wishes to all xx

 

[Al]

Sorry about your dad Sadbunny but glad you found us. My ancestors are from County Cork.

AL.

 

[notgivnup]

Sandbunny, I am so sorry about your Dad, and the reason you are here. But here you can find help and comfort from some of the most loving people on earth. Glad you found us, and welcome. Praying for you and your Dad. Hugs

My grandpa was from Ireland too.

 

[chloeann]

Hi, I'm new. My mom was diagnosed with ALS in April, 2011. She is 82 years old and not doing well. Her neurologist kept me behind on our last visit a month ago to say that Mama would qualify for hospice care. She wants to live until December 17th , 2011, when she and my dad will celebrate their 60th wedding anniversary. Daddy is her primary caretaker, and I spent about 5 hours a day with them. It may be their age, but my parents are not adapting well to the changes that come with the disease. Lordy! Lordy! Mama started falling 2 years ago, after several years of false diagnoses including restless leg syndrome and arthritis, and has deteriorated from a vibrant active women, who I thought would outlive me, to be bound to a bed and wheelchair. She struggles to breathe, but can't abide the bi-pap machine. She can still swallow, but has trouble with coughing and mucus. Transferring her to the bedside toilet is our biggest struggle, and she cannot or will not use a diaper.

Thanks for hearing me out! I love Mama so much. She has such a sweet spirit and this disease has stolen so much from her.
I hope I can be an ear for some of you, also!

 

[brooksea]

I'm very sorry about your Mama, chloeann. I hope you will find lots of support here. Bless you for helping your parents through this!

 

[Al]

Hi and welcome. Have you called your local ALSA/MDA to see about loaner equipment?

AL

 

[chloeann]

Al, thanks for reminding me. I have a card for a care services coordinator for the Alabama Chapter of ALSA. I think it is time for me to contact her. Again, my parents are "old school" in some ways and it is very hard to get them to accept help. It was months before they would even think of having home health come out....and my dad threatened to fire them every visit.

I will call the coordinator the first of next week after our US Thanksgiving. I spent all day today cooking Mama's traditional Thanksgiving dinner, asking her to supervise me...and she did a little. This will most likely be her last Thanksgiving, and I wanted to serve all her recipes.

C

 

[HelenL]

Welcome to our site chloeann, sorry about your Mom.... but I think it's great that you have your Mom involved in you making her dishes. There are a lot of amazing people on this site, hope you can find some solace from us all. Hope you have a good day tomorrow, enjoy every precious moment.
Helen

 

[momap53]

Chloeann, It's so wonderful that you're doing this for your Mom. Best of luck to you.

 

[w2bhelpinghands]

Hi I'm new and just as my username says 'w2bhelpinghands' for my friend who was diagnosed with ALS. We have lost touch slowly since college and now can't get a hold of her at all. I am hoping to find her maybe on here so I can find out how to best help her. And if not, maybe I can just get some tips so if she does accept help at some point I can be there ready and waiting to go. I just want to know that she is okay...

 

[lovedbygoldens]

New to site, just added thread introducing myself. My mom is 60 (turning 61 tomorrow) and received her ALS diagnosis in March. Thanks and look forward to sharing.

 

[LordJohn]

Re: Hi everyone

Lovely city Cork, had an inteview at Cork University years ago, did badly, but loved the city, its people and the food. Good help and support available via the forums.

 

[Lizzyb]

Hi! I am new. Was diagnosed in August 2011 with ALS. Been reading the forum for some time, today is 1st day I could post. Most posts have kept me thinking positive. Every day is a challenge but I find laughter is the best medicine.

 

[Okie2]

Welcome, and yes try to stay as positive as you can. It does get hard sometimes, but it really does help.

 

[druithleigh]

Greetings, My name is Lori, I'm from North Western Washington State and my mother was diagnosed with ALS in July of this year after she started displaying bulbar symptoms (difficulty swallowing, difficulty with speech, neck weakness....). The progression of my mother's disease was very rapid and I mean far outside the expected progression curve. She went from showing minimal bulbar symptoms in late July to passing on from the disease just this Tuesday. The reason I decided to join the forum is that in the six months between diagnosis and death I went through a crash course for in home ALS care by way of hands on experience with some trial and error and I would like to be able to share my experiences both practical and supportive with anyone who needs advice or care tips. To put it simply, I'd like my experiences with my mother and her fight with ALS to be of help to others.