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PALS
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Im looking for a bit of advice as I have recently found out that my girlfriend is pregnant, which makes me very happy but Iam also very sad on the other hand as I do not know if in 6 months form now I will be much use to them. I have known my girlfriend for 10 years but we only got together when i got my 75% diagnoses in June 08 so on top of my illness, getting together, talk of moving in together and now a baby she is freaking out as she does not know what is around the corner in regards to my illness, well we both do roughly but have ignorred it and got on with things.
Is there any one out there with ALS that has recently had a child?and if so how are they coping at the minute I can still walk very slowly. my left side is weak and my speech is very slurred. I suppose the question Iam asking is would I be able to cope with looking after a baby?
Any advice or thoughts would be greatly appreciated

Thanks
Alastair
 

Jennifer51

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441
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PALS
Diagnosis
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Country
UK
State
England
City
London
We have a friend who was diagnosed when he was about 36 and their child was one year old...then a while later, they decided to have another child...so the new baby was born about a year ago. The friend has not passed his third year since diagnosed and is now not really talking, and cannot move at all and is sleeping downstairs and has to have help morning and evening to do everything required. I think it was an extremely brave thing to decide to do...already having a baby and knowing that he was well into his diagnosis...but they dont regret it even though it is extremely hard work for his wife....
(ps have been trying to PM you, but it wont go thru)
jennifer51
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
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Missouri
City
Springfield
Alastair,

I'm sorry that you are so ill and sorrier still to hear that your girlfriend is freaking out on you. My understanding is that you have been diagnosed with ALS. Is that correct? I didn't get the 75% part. Are you 75% into the disease or is the diagnosed 75% certain?

If you have a definite diagnosis of ALS, you and your girlfriend really need to talk about your future plans and how your illness is going to affect them / change them. I know this is no new awakening for you but it may be for your girlfriend as she may not fully understand what this disease does in its progression.

Have you thought about a caretaker just for you? She will be busy with infants.

What concerns me about your situation is the current emotional state of your partner regarding your current physical condition. You both should really discuss the future matter of factly.

Just some thoughts...

Zaphoon
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
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jennifer, Alastair needs a few more posts before being able to get PM's.

AL.
 

Jennifer51

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Joined
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Messages
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thanks al.... I thought that was the case..will keep trying...no big deal
 
Joined
Oct 9, 2008
Messages
14
Reason
PALS
Diagnosis
06/2008
Country
UK
State
ARMAGH
City
ARMAGH Northern Ireland
Hi Jennifer, thanks for that I have been away in Spain for a week or so the weather was awful. Its a real mess i'm in as I do not live with my girlfriend and was kind of hoping that I might be able to do so with a baby on the way but maybe that is a unrealistic target as things will only be getting harder from now on. It seems as if your friends have a very strong realationship which would cancel out a lot of the fears that lie ahead and eventhough we have known one another for of 10 years we have only being going out 4 months so its difficult. If there was no baby I would just walk away as i feel like a burden to her as I feel all I talk about is my illness as it is constantly on my mind. But sure this is life,I will have a talk with her this week and see how she is feeling as I have been away for a while so maybe I will be able to make more sense of it then.
Thanks
 
Joined
Oct 9, 2008
Messages
14
Reason
PALS
Diagnosis
06/2008
Country
UK
State
ARMAGH
City
ARMAGH Northern Ireland
Zaphoon, I have a full diagnoses but back in June my neurologist was 75% sure I had MND, Ia also waiting to go to another neurologist for a second opinion as requested by my neurologist as he wants to be 200% sure because of my age. I would say looking back at it Iam about a year into the illness but it only has really started effecting me from May 08.
Iam going to sit down this week and try and disscuss my progression and see where that leaves us but realistically I should not have got myself in this situation but there is not a lot I can do about it now.
Thanks for the advise.
 

markwayne

New member
Joined
Oct 22, 2007
Messages
6
Reason
PALS
Diagnosis
11/2007
Country
US
State
Texas
City
San Antonio
Alastair,

I am not exactly in your situation, but I do have ALS and I do have a year old baby. My daughter (our third child) was born in July of last year. I was diagnosed in November. I had symptoms during my wife's pregnancy. Our other childern are eight and six.

It is a bit of a juggling act for our family, but we make it through. I can not think of a better way God could have given us a blessing than that little girl. She keeps us all smiling and moving. Yes there are times that we all want to sleep and she doesn't . Or she and I both need Mom. But I can honestly say she has kept all of us focused on the best of life and not the worst. Our house would be a sad place with out those childeren bringing us brightness.

I do feel guilty sometimes that my childeren need their Dad's help more than I can provide. Or if I will even be here to help them in the future. But I have to trust again that God will provide prefectly for them as he has for me.


I guess my advise is do not over think this too much. Sounds like you have a blessing to help you and your girlfriend.

God Bless you and your new family,
Mark
 

jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
Alastair
My name is john when got DX.I had a boy 1 and a girl 6 and I watched them grow up and now my boy is 18 teen and my girl is 23 and I have a Grandbaby 4 months old. so don't get down. I know I thout the same thing that was 17 years ago. My advice keep your head up and work out it helps it did for me.
GOD BLESS YOU AND YOUR GIRL FREIND & BABY
John
 
Joined
Oct 9, 2008
Messages
14
Reason
PALS
Diagnosis
06/2008
Country
UK
State
ARMAGH
City
ARMAGH Northern Ireland
Thanks very much Mark and John your words have given me a bit of hope.
I guess my worry is that I do not know how quickly my illness will progress as I was diagnosed in June 08 and my walking has become poor and my speech is fairly slurred already and my left hand is fairly weak but I suppose nobody knows the answer to that question I will just have to play it by ear.
Thanks again
Alastair
 
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