aunt was recently diagnosed with ALS

[gilly]

Hi everyone.
My name is Nicole. My aunt was recently diagnosed with ALS. Her speech started to sound slurred back in December 2005 or around then. We thought it might be a side effect of some medicine she was taking. Of course, after going off the meds... the symptoms of slurring didn't improve. They got worse? As many of you know, I'm sure, it took eliminating any other possibility before they diagnosed her 2 weeks ago with ALS. So off I went on the internet hunt to track down any and all information I could about this stupid disease. I was (still am) shocked. I never really knew what Lou Gehrig's / ALS was. My aunt is blessed to have a family and great circle of friends to support her and do all they can to get her back to laughing again! But it's hard. Does anyone have any suggestions about what people with ALS might find comforting or helpful? I am feeling helpless. I live so far away from her and I just keep sending packages to her - everyday! I'll be broke by Labor Day! Her tongue, lips and one hand seem to be mostly affected at this point. Any ideas of what I can do to help her at all?
Lots of love and prayers for everyone. This forum has given me a stronger and more inspired outlook on life.
Take Care. Nicole

 

[hope]

Nicole,

You are doing a wonderful at supporting you aunt. I believe that love can move mountains. It is very important to always show love. Sometimes it only takes a kind word, a smile or a hug. Sometimes just being there and not having to say anthing means the world to someone who is ill. Life is truly very precious. Living in the moment I find is helping my husband and I. We try not look to far ahead and we try not to read to much because it can be very depressing to know to much. My husband was diagnosed almost one year ago. We are still in shock and we are totally devastated. We thought we would never smile or laugh again but we do smile and we do laugh. I know I cannot offer you the answer to what is right and what is wrong but I can tell you this, many people stayed away due to being afraid of not knowing what to say. This brings lonliness and a great feeling of loss. Hold on to your loved one, never miss a day of saying I love you and care about you. It may be just a quick hello or a cup of tea together but just knowing that comfort is always close by warms the heart and soul. Give yourself a hug too don't forget because we as family and the loved ones go through a tremendous amount of pain and suffering also. Be honest with your loved one, be yourself hold on tight and never let go. Love can mend a broken heart and one never knows it may cure a terminal illness.

Sandy.

 

[hope]

Sorry about the spelling errors. It has been a long day and a painful day. Tired out, hope I made sense.

Sandy.

 

[gilly]

thank you

sandy...
i have read so many of your postings and i am touched by how devoted and strong you are. you and your husband are so blessed to have each other. i would imagine that my uncle is going through very similar emotions as you describe while he witnesses my aunt losing certain abilities. the diagnosis was only a couple of weeks ago (although the symptoms have been occuring since december) so they are certainly still confused and very unsure how to approach each day. but he holds her hand and promises her they will get through it together which is a beautiful thing. i wish i could do more than call her and send her cards // packages but we live 9 hours apart. my mother is going through a very hard time knowing that her sister is suffering. they lost their mother at a very young age and since then have really been like each other's "mother figure". anyway, what i pray for most is that her speech lasts as long as possible. it's becoming so hard to understand her and we're all very scared of losing communication. i pray for you and your husband and that you continue to share more laughs than tears. you are a wonderful light in his life, i have no doubt. and he is the same in yours, i can tell.
much love...

 

[MtPockets]

Sorry Gilly

I agree with Hope. Your aunt needs you now more than ever. There are a lot of people who cannot bring themselves to see someone who is terminal and dying. I do not understand the psychology behind this but I myself have a son who is an emergency room doctor, and he refuses to believe I have ALS. He is in complete denial. He does not want to see me or talk about my disease in any way.

His grandmother just passed away this year with bone cancer and we were all in the room to try to comfort her as best as possible. He got up and said she will be dead within 3 hours and I cannot watch another person die and left and went home. She died 3 1/2 hours later with us by her side holding her hand and praying for her.

It's hard for me to understand that when I tell a friend or relative that I have ALS they cut off all contact with me when I need them the most for support. They have no idea how much this hurts.

Thank God you are trying all you know to do to help your aunt. When she gets to where she can't talk write her letters as often as possible and encourage her. I know it will mean a lot to her. Just show her as much love as you can, that's all I can advise.

May God Bless,
AL

 

[gilly]

hi al...

al,
thank you for your message. you're right, i can always write letters to my aunt and i will when the time comes where she can't speak.
i know what you mean about some family and friends turning away in a time of need. but i don't understand it. something similar happened years ago when my parents divorced. when my mother and father needed their friends' support... suddenly as "single people" it was like they had a disease. no more dinner party invites. no more phone calls. totally lost touch. very strange.
but when you are sick and scared and truly need a hand or a shoulder to lean on... it amazes me that some people ignore the fact and go about their own lives. i suppose some of us are stronger than others.
i read your posting on one thread where you said you sometimes have trouble sleeping because you're scared and have tried to put on a brave face for your loved ones. i must tell you, the same is true on the other side. you're not alone. i also have many sleepless nights thinking about my aunt and how she must feel and how helpless we are to save her from these stupid symptoms. and i have nightmares that wake me up and then i end up watching some bad movies on tv trying to bore myself back to sleep! so trust that your sleepless nights that might seem lonely are in fact shared by many others out there!
i'll keep you and your son in my prayers. i hope he learns to look beyond whatever they may label your disease as (als or whatever else it could possibly be) and focus more on the fact that you need his support and love now more than ever. he's scared. probably doesn't know what to say or how to help. we all handle it differently.
hold on...
nicole