New Member - trying to find where I fit in!

Linnie · 05-05-2008, 03:46 PM

Hello folks,
This is all new to me!

Writing, seeking fellow healthcare professionals (I am a Private Duty RN having cared for this gentleman for 2 yrs) and family members to help guide me during our last stages of this cruel disease. Is this where I need to be? Seems like I fit into a few different categories. Any help will be so greatly appreciated......
Also, is it presumptuous to try to answer questions posed by caregivers?
Thank you to all.......reading your stories and entries, I feel such kinship.
Kindest regards to everyone........
Linnie from Maine

PDaddy · 05-05-2008, 03:59 PM

As a "PAL" I welcome you to the forum, I bet you have a lot of good experiences to share with other caregivers! Thanks in advance!

Al · 05-05-2008, 05:31 PM

Hi Linnie. Welcome. Here or the Caregivers section are fine.
AL.

mndireland · 05-21-2008, 04:24 PM

Hi im only new to this, im from Ireland and my mother was dx oct 07, havent really spoke to anybody and dont think the care or support seems as good over here as you have in the states. Still not sure what we are doing, my mothers hands arent great, she can still grip small things has difficulty getting dressed, washing, and a lot of everyday things. Im here a lot but not enough, just waiting to become a full time carer so I can be here more. Still not 100% sure how bad she is or how bad it will get, the coughing can get bad, her breathing is getting harder, sometimes loses her breath just walking the stairs, her legs are getting weaker also. Not sure how long she will be walking for, or talking for, or is all of this inevitable that they will go, not sure on anything really?? Any information and advice welcome

Farmgal from ND · 05-21-2008, 05:04 PM

Hi and welcome, you have come to the right place for good advice and information. I am new here to and I can tell you that you will feel right at home here !!

Al · 05-21-2008, 11:34 PM

Hi mndireland. Welcome but sorry for your mum. There is a search feature up top you can use or just read the threads on each different forum or you can just ask questions. Take care.
AL.

jimmig · 05-23-2008, 10:25 AM

Quote:

Originally Posted by Al

Hi mndireland. Welcome but sorry for your mum. There is a search feature up top you can use or just read the threads on each different forum or you can just ask questions. Take care.
AL.

I'm recently dx. my heart and thoughts are with you and your mum. My roll is the reverse of yours. My mum walks in your shoes. Family and friends are a great comfort.
the support and commonalities on the forum you will find will a great place to talk and listen. How is you mums spirit? Hopefully it can build through you. I't is so easy to let it drag you down. My days are a constant sruggle to remain mentally intact.
Al says:live everyday like its your last..........thats truely the best information to have.
may your days last long.
jimmig.

MtPockets · 05-23-2008, 10:39 AM

Hi Ireland, Welcome to the forum. Feel free to jump in with any questions you may have. Is the dx ALS?

Also welcome to the forum Linnie from Maine. I know you must have some good things to share with our caregivers here. Feel free to jump in anywhere.

mndireland · 05-23-2008, 05:02 PM

Hi all, my mums spirits are really good, and I cannot tell you how grateful i am for that, think if it had got her down i would have went down with her, as i took it really hard, my mum has been a widow for almost 30 years and had brought up her 4 children on her own for most of our lives, so she was always really independant, she finds it really difficult to ask for help, but she has never let hard times get her down. Her moto is, you take what life throws at you and throw it right back. We have a family holiday this week and also her retirement party coming up and she is really looking forward to both, after this i think we will need to come up with something new to keep her looking forward!
Thank you for all your kind comments and words, i dont always write but i read the comments everynight, thanks again!

mndireland · 05-23-2008, 05:05 PM

sorry mtpockets was meant to say, her dx was als, but over here they call it mnd, which is motor neuron disease, it comes in about 5 different forms and some are not as aggressive as others, that you may live with for a long time. But my mam has the most severe form of als, which usually when the give the dx they say about 2-5yrs. They say that it is called many different names in different places, if ever you need some new sites, just search under mnd instead of als?

w10072 · 08-09-2008, 02:27 PM

Hi there, my name is Sandra and I live in Hillsborough, Northern Ireland. My brother was diagnosed with ALS on 22 March 2008. I have read lots of ALS forum stuff but haven't found anyone from here commenting on any forum. Apparently there are only 95 people in Northern Ireland that have MND of any kind. This surprises me. I'm glad there's now someone else from Ireland on this forum. My brother is only 43 yrs of age and is going to china on 9 Sept for controvertial stem cell treatment. His doctor in the hospital isn't too keen on him going but he says that he's not being offered anything here at home. Let's just hope it helps. x

dadspooh · 08-10-2008, 06:36 AM

With all of the worries my family has had since my father was diagnosed with ALS, any hope is good. I hope for your brother's sake and selfishly for all those other ALS patients out there that your brother's surgery is a success. Keep us informed. Kim

MtPockets · 08-11-2008, 10:15 AM

Quote:

Originally Posted by w10072

Hi there, my name is Sandra and I live in Hillsborough, Northern Ireland.
My brother is only 43 yrs of age and is going to china on 9 Sept for controversial stem cell treatment. His doctor in the hospital isn't too keen on him going but he says that he's not being offered anything here at home. Let's just hope it helps. x

Just wanted to let you know a few on here have tried the stem cell treatment will poor results. If you want more information about it please do a search with the icon above and enter stem cell or stem cell treatment, etc. and see what has been discussed on the forum.

I am trying to be as gentle as I can, to not upset you about this treatment, because I know you are looking for something that will bring HOPE. I am sorry, but at the present time, this treatment does not help.

I know if I were considering this I would want to be told the truth and be prepared for what may happen. Like I said, do a search and read for yourself.

We are glad you are here on the forum and want to help you with anything we can in this time in your life, but at the same time be open and honest about all things.