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rocmg

Distinguished member
Joined
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388
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PALS
Country
UK
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N/A
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Hello all... I have to say I feel a bit like the prodigal son returning after such a long absence from the forum. I hope you will forgive me.

I was saddened to learn of the death of joelc recently and felt the need to post again to tell you all that I still think of you often with the usual admiration and respect.

On Saturday I will attend the funeral of another PALS. A lady from near my town who passed away yesterday morning after a three and a half year battle with the beast that is ALS. I hope if there is such a place is heaven that she is there tonight, helping her daughters through what is the saddest time of their lives.

With regards my own lovely mammy, she now uses a wheelchair often although I made her do short walks from the bathroom to her bedroom to keep her morale and strength up. I'm sad to say she spends more days than I would like in bed or in her chair by the fireside. However, she is still eating, talking intelligibly and no bipap has been suggested by the MND nurse since she still sleeps with one pillow. Long may this continue, please! I'm almost scared to say this in case we encounter some other horrible change. We are now in our third year of diagnosis and perhaps as many as 4 or 4 1/2 years since symptom onset. So she's doing good, right?

It is the one year anniversary of my brothers death in two weeks time, so things lately have been very emotional for us all. To mark the occasion we will fill the house with flowers and music and hopefully open the windows to enjoy the beginning of Spring. Another season without him, another season of ALS, but another season nevertheless and I am trying to be grateful.

After my brother's death my dad bought me a horse so that I could pursue again my childhood love of horseback riding. He was a great horse and a better friend. So many nights I couldn't sleep and went out to him in the field and just laid my head against his mane and cried. Perhaps he knew what I meant, or perhaps he just knew I had apples in my pocket. I had him for 8 months and he was taken from me too. He died a month ago after a tragic accident. Life is just a series of losses and I'm coming to realise that. However, Im not ready to let my mum go yet, I will never be. I still dread that day. I worry about how I feel and if I will want to go on without her. I've made a plan that if I get another horse, I'm going to ride from one end of Ireland to the other, to raise money and awareness of ALS/MND. It's a pipedream at the moment, but we'll see what the next year brings...

I hope you are all well, or as well as you can be.

I will try and be in touch more regularly.

Love and best wishes.
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,287
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
ma.
City
halifax
wishing you and your mom the best good to see your name again
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Very nice to hear from you! I'm happy that you are still having time with your dear mother.

I'm very sorry about your horse.

Please hang in there! And put a flower in a vase for your brother from all of us here...

Hugs to you! Please don't stay away so long. You are part of our family!
 

rocmg

Distinguished member
Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
State
N/A
City
N/A
hello CJ and tdmass thanks for your kind messages. How are your pALS doing? Any plateaus recently? Hope so.
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
A dream is reality that just has happened yet..I love horses, and love your idea. Great to hear from you.. Visit often, you were a informative and helpful member.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi there, good to hear from you again. Don't be a stranger.

AL.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Good to see you back, rocmg, and glad to hear that your mother is still getting along.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Hello again. I too was pleased to see you post. Glad your mum is holding up, she is doing very well and I hope she continues to progress slowly. Keep in touch! Dani
 

rocmg

Distinguished member
Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
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N/A
City
N/A
Dani -- my mum mentioned a man called Lawrence on TV about speech technology for MND patients. Was this your Lawrence by any chance? Is there a link online to the program? Hope you three are doing as best as you can.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Hi, yes it is my Laurence! We did a piece about voicebanking for BBC Inside Out North West. It's available on IPlayer. Stanley is in the film too. Posting this from my phone so hard to get a link, but search should lead to it. Inside out north west 7 march episode. D
 

rocmg

Distinguished member
Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
State
N/A
City
N/A
Just watched it Dani! Stan is ADORABLE. You both were so brave, doing that interview. You sounded so articulate and pragmatic about the future. It was heartening. I really don't understand why the MND nurses can't make these kind of recommendations to patients because I know you and Laurence probably did all this research and probing on your own. Good luck to you all although I hope Laurence has his voice for many years to come.
 

mare

Senior member
Joined
Jun 5, 2008
Messages
761
Reason
Lost a loved one
Country
US
State
PA
City
Lafayette Hill
Hi, Rosheen-
It is good to "see" you again; you sound good. And it sounds like your Mom is doing good too!:smile:
Lookng forward to seeing you around.;)
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
How WONDERFUL to see you here again! You have been missed! Please give your dear mum a big hug for me. I'm glad her progression has not been as fast as you'd feared it would be. welcome back, and don't go away for so long again!
 

strikeout

Distinguished member
Joined
Dec 4, 2007
Messages
178
Country
US
State
NJ
City
Brick
Rosheen,
I can't tell you how happy I am to see you on here today. I do not frequent the forums as often as I had been, but do check to see how everyone is doing once in a while and every time I had, I'd check to see if you had any recent activity. Was worried about you after going through such a tremendous loss with your brother and wondered how your Mum was. So happy to hear that her progression is basically at a slower pace. Don't be a stranger, I would love to hear from you!
xoxo Michele
 

rocmg

Distinguished member
Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
State
N/A
City
N/A
awww.... many thanks to mare, rose and michele for your lovely comments. feels nice to be back. i will try make a greater effort to post. for the longest time i was so angry and bitter it was difficult for me even to pretend to be positive about ALS... but a little of my strength is coming back, i feel. very, very glad to see you three lovely ladies still posting.
 
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