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Julie S

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Loved one DX
Country
UK
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West Midlands
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Coventry
My father was diagnosed in May this year with MND. At the time I neither understood or could comprehend what this would mean for me and my family. My mother did a great job in protecting me not telling when he had falls, when things were getting difficult. I would always ask questions but my mum never really gave me an answer she would always find a way to deflect the conversation and kept me in the dark. I would visit and it would not be discussed. I had to pretend everything was normal when it wasn't.
For a while I felt completly alone, lost in the worry and the panic that was taking hold of me, anxiety attacks became frequent and I had difficulty concentrating. Yesterday I finally brokedown at work and had to leave. It may sound stupid but I felt a failure for not being able to work,that I couldn't deal with my emotions and carry on as normal, but it forced me to admit I needed help. I called my mum and we finally sat down and talked openly and honestly about the disease and I found out my father had ALS.

I found this website today , I have cried and shed a few tears reading the stories and the comments but I finally feel that I can face what is happening to me and my family and I am not alone. To know that there are people out there like you who can share thoughts, feelings and helpful tips has been a comfort to me.
My father at the moment struggles to walk (he has a walking frame) sits in a chair all day, cannot eat or drink unaided although his speach is ok at the moment. I noticed yesterday that his ankels were very swollen and I am panicking a little. My mother said it is because he is sitting in his chair for most of the day and it's due to lack of movement. Is this normal?

Thank you for listening

Julie
 

comfortable with ALS

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Sep 24, 2007
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Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
Hi Julie

iam very sorry about your father being diagnosed. I no it has to be the hardest thing ever to go through watching him suffer. You did come to a good place and everyone on here will help you. You and your family will be in my prayers. Jenny
 

l2c

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Sep 11, 2007
Messages
44
Reason
CALS
Diagnosis
n/a
Country
US
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Florida
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Fort Myers
Julie, my husband's feet and ankles are swollen...he sits most of the time. I try to get him to put his legs up on another chair for some time each day to releive the pressure. In the morning the ankles are less swollen. My DH has had ALS for two years now.

Marlene
 

brooksea

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Julie,

do not feel like a failure for having to leave work and not being able to deal with your emotions! Everyone that has someone in there life with ALS has become emotional at one time or another. After all ALS is not your garden variety illness.

I'm glad your Mum was open with you about your father. I'm sure it took a lot of pressure off of her as well. It is good that your parents have such a loving daughter.

Glad you found this site. Hope you will find the support you need here as well as from friends and family.
 

landscape

Active member
Joined
Jan 14, 2007
Messages
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Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Julie:
Check out this site:
http://www.living-with-als.org/Diane/swelling.html

I think you will find it really helpful. The 'treatment' paragraph gives suggestions for proper positioning of the legs.

My husband wears Jobst "Sensifoot" knee high socks. They only give mild support but they are really easy to get on, warm and comfortable. Since he has mild swelling, poor circulation and very cold feet they work well.
 
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CindyM

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Learn about ALS
Country
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New England
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Anytown
Hi Julie- Welcome to the forum. I see you've had a chance to meet some of our great members. It is sad to watch a family cope with this but we will help in any way we can. Cindy
 

Julie S

New member
Joined
Nov 7, 2007
Messages
2
Reason
Loved one DX
Country
UK
State
West Midlands
City
Coventry
Thank you

Thank you all so much for your kind words, support and the tip for the socks/link for swelling. I will pass the info onto my mother.

So good to be a part of the ALS support group.

Thanks again

Julie
:)
 
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