Introduction - Mother with bulbar onset

Five · 09-23-2009, 05:36 PM

Hi,
My mother (69yrs) has recently been diagnosed with bulbar onset MND. First noticeable sign was in about June 09 with some difficulty in articulating words. She hadn't been feeling 100% this year, but having lost my father to pancreatic cancer in Nov 09, her GP felt that she may have been having a physical reaction to grief.

Since June her speech and swallowing has deteriorated, as well as struggling with emotional lability. Her EMG shows that nerves in her legs and arms are already affected, though she is not noticing any symptoms here.

Her neurologist has discussed a PEG tube with her. As she is still managing to eat (and enjoy restaurants etc) and stay hydrated, he was comfortable waiting a while before putting a PEG in.

My mum, my sister (who will probably find this post - "hello!") and I are booked into a workshop at the local Motor Neuron Disease Association. I wonder if anyone else in this forum attended something like this early on in your diagnosis, and if so, how did you find it - I am anticipating it could be quite confronting? I am sure everyone's reaction to this diagnosis varies, and I suspect my mum is just wanting to absorb a little bit of information at a time...

Reading many of the threads in this forum I am struck and inspired by the many positive, meaningful, productive lives that are being led despite (or perhaps because) of this diagnosis. I wondered if anyone could share with me if there had been a particular trigger or experience that helped shape these attitudes, or whether it has been through their particular journey in life.

I imagine, like many other family members and carers, I just want to make things right for my mum. Support her to have the life she deserves and save her from pain - just like I know she does and has done for me and my siblings.

Thank you to all the people who contribute and share in this forum, it is enormously helpful when searching for genuine information on this condition. Thanks.

BethU · 09-23-2009, 05:47 PM

Welcome, Five ... I'm so sorry about your mum. She is lucky to have you and your sister by her side. It is a difficult struggle for the whole family.

If she's interested in the forum, that would probably be a good idea. I held back from interacting with other PALS for a few months ... I really didn't want to know what lay ahead. But I did go to a conference after a few months, and found to my relief that other PALS weren't scary, and the information was very helpful.

There is SO MUCH to learn as we deal with this, and every patient is unique. But sharing makes it bearable.

Best wishes to you and your mom.

shelleynshaggy · 09-23-2009, 05:50 PM

Five-
We are at the start of our journey too. After the initial shock I decided I cannot let Jim's diagnosis ruin what is left of our time together. God has granted me a strength I did not know I had before this summer. I don't understand why this has happened to our family and I wish God did not trust me so much - but in a way this has changed our lives for bad and good. Even my mom commented that the tension that was between Jim and I is no longer there. I plan to make the best out of the time we have left - make the most of it and the most memories we can for our kids.
Shelley

GlenBrittle · 09-23-2009, 06:17 PM

High Five, (ok I could not resist)

Welcome to the site.

I attended a workshop early on when I was diagnosed. They were very caring and supportive. They did not try to shock you , but instead would answer your questions in a concise but humane way.

I have found that you will get the same info and more from the people at this site. We are not doctors , but have a wealth of experience that is sometimes not found in a doctors office.

The only question that is stupid , is the question not asked.

Glen

thelma313 · 09-23-2009, 07:19 PM

Hello Five,

Welcome to the forum. I'm glad you found us but I'm sorry you had to come looking for us. I discovered this forum soon after my dad's diagnosis which was over a year ago now and I am eternally grateful for the wealth of information and support that I have found here.

A couple of weeks ago my mom and I attended a support group meeting at the ALS Society here in Montreal, Canada. There was one family there who had just received the diagnosis and their pain and grief was so raw, it brought that back for me. I don't regret attending the meeting though as I met some wonderful people there and some were very inspiring to me. My dad did not attend the meeting because it is difficult for him to get around now and I suspect he feared it would be too emotionally intense for him. I think it depends what type of person you are. Everyone reacts in their own way. Some people, like me, want to know what lies ahead and want to learn everything they can about the disease while others, like my sister, want to deal with it as it comes.

Everyone is definitely unique but like Beth said we can all benefit from sharing.

My heart goes out to you and your family,
Rosella

hopingforcure · 09-23-2009, 09:31 PM

Five,
Welcome, just be there and do what you are doing. You seem like you and your family (welcome), are just what the doctor ordered. Sound's like mom has given you the tools to help her along this journey. You will find a ton of info here, we have all been were you are, and can relate. I think the more are families remember we are still the same inside is a big help, so many people see us a different for are physical changes, hearing your words for your mom only assure me your love for her will see her through this. I am constantly reminded daily of the goodness of cals when I read posts. I think of the love, outpouring and support that is shown on this forum is amazing, I got to thinking were else can we interact with someone from Singapore, China, USA, and Canada in a couple of minutes?.. We are here and we will do are best to help you and your family along the way.

Five · 09-24-2009, 12:22 AM

BethU, Shelley, Glen, Rosella, Hoping
Thanks for your welcoming words and most welcome advice.
A high five to you all

(thx Glen)

Keep thinking of a quote I read the other day:
"You can't stop the waves, but you can learn to surf"

Cheers.

DgtofTNfan · 09-24-2009, 06:54 AM

Five,

Welcome to the forum. I am sorry for the reason you have to be here. You have come to a great place for information and sharing. The members here are friendly and supportive. We did not attend a workshop of sorts but I am sure it will be informative and you in turn will have some great info to share with others here.

I love your avatar and your quote.

Again, welcome.
Dana

BarryG · 09-24-2009, 12:39 PM

Five, welcome to the forum. I wish that none of us had to be here but even so I think that this forum is the best support group that you will ever be a part of. We have a number of bulbar onset PALS here (including me) so if you have any questions or comments just fire away. While I have been to ALS functions I have not been to any in person support groups so I can't comment on them but as others have said, it is all about attitude. Once you accept that you or your loved one actually has this horrible disease then it is all about "OK, I have it, now what? How do I make this as good as possible"

As far as the PEG tube is concerned, as soon as she starts to show signs of eating/drinking difficulties the peg should be planned. I waited too long for mine and ended up losing almost 25% of my body weight. Remember, even with peg you can eat as much or as little as you want by mouth and can still enjoy your food.

tdamess · 09-24-2009, 12:51 PM

five, you will learn a lot from the best group of people i have come to know ...sorry you are here along with the rest of us but welcome

DebbieR · 09-24-2009, 01:17 PM

Five - welcome. So sorry that you had to go looking for this site - but you really will learn a lot from the people here and they are a caring bunch. I have to agree with Rosella that everyone is different and deal with things in a their own way. My dad has never gone to a support group and showed little or no interest when it was mentioned but I can see where it might be helpful. Let us know how it went.

Gelthling · 09-25-2009, 08:02 PM

Hello Five,

The NSW MND Association is great when it comes to equipment - I haven't been to any of the meetings, as there are none within an hour of our area, and mum was/ is in so much denial she never wanted to attend or read up or anything!

if you have any questions or need an ear, please dont hesitate to contact me- my mum was diagnosed Feb 09, we noticed probs with her speech March 08, since March she has gone from using a cane to now mostly using a wheelchair. And she cannot speak any more to my mums frustration - my mum was the most talkative person I know!!

Best of luck with everything.

Five · 09-25-2009, 09:03 PM

Thanks Dana, Barry, tdamess, DebbieR, and Gelthling

Still reading through many threads within the forum and for me it's helping me get my head around things.
Mum had a TTY phone (she listens and types her response to callers with help of a relay centre) delivered yesterday. The training session went pretty well. It's a very different way of communicating ... without the ability to respond quickly. Mum's typing looks pretty good though, and for someone just getting comfortable with texting and emails I think she's doing pretty well.

Enjoy you weekends.

Tich1 · 09-26-2009, 04:40 AM

Hello Five , welcome , sorry you had to find us , but so glad you have .

x

handinhand · 09-26-2009, 01:33 PM

Hi Five , When someone new joins the Forum.. It makes me sad because I know how awful the first little while is ,and how devistating you feel. I think that was the worst time so far for me... The forum is a great help to all of us. Please stay in touch..we all care very much!! Hugs, Linda