*Have ALS-Getting Married*

[xsparklingwinex]

Hi My name is Holly. I am 24 years old and was diagnosed with ALS 2 years ago. I am getting married next year to a wonderful man. ALS is not an easy disease. I was just wondering if anyone had any suggestions or tips to make life easier for him at home.
Thanks, Holly

 

[gilly]

congrats!

holly, congratulations to you and your future husband. you've come across a wonderful group of people on this forum! keep in touch and we'll help you through any tough times but in the mean time you have so much excitement in the coming year. it sounds like you are marrying a wonderful person and as long as you have each other to lean on, living together will be fun for both of you. i don't know how everyone else feels but i wouldn't spend much of your time worrying about how you guys will fit your lives in the house around ALS. instead, take it as it comes and make ALS fit into your lifestyle. your future is so exciting and you never know how ALS / when ALS will progress - so enjoy yourselves and see what changes you might need to make when the time comes.

you're so young... my boyfriend and i have been dating for almost 5 years. i am 28 and he is 31. i can't imagine getting married yet. i am a BIG chicken. we live together though. so i don't know what the difference would be? i will give you one bit of advice for living together. KEEP THE LITTLE THINGS that might bother you LITTLE and life will be lots of fun!

congratulations again. i hope this posting doesn't sound preachy and empty minded. i don't know much about ALS personally. my aunt was diagnosed this summer and i dove right into the research and fundraising and everything. wish i could do more for her.

lots of love. nicole

 

[hope]

Holly,

Congratulations. I believe the most precious thing in life is loving someone and being loved in return. Marriage is just that. It is a beautiful bond between two people who truly love one another. Through sickness and in health are the words I heard when I married the love of my life, my best friend. Those words have true meaning. My husband was diagnosed almost one year ago. It was devastating then and it is still devastating now. The advice that I can give you is not how to live with this disease. My advice that I can offer you is when you love someone you love the person that they are. The man I married is still the man today that I married many years ago. Even though his physical body is not the same, he is the same. He is strong beyond words, kind, caring, truly precious he is. As I watch his decline I hold onto the wonderful man I said I do to. I will walk this walk with him, I will hold him tighter every day, I will carry him when he cannot carry himself. What I am saying is this, love binds and nothing can pull it apart. As long as there is breath in us we will continue to LIVE. Live that is my best advice to you. LIVE life. Laugh when you want to laugh, cry when you want to cry, let the heart feel. When you are feeling from the heart you hold your head up and you fight this disease with everything you have. Never ever give in, love will hold two people together who love each other together. There will be days of pain, days where you feel like you do not know how to feel or what to do but look into the eyes of the one you love and just keep living. Hope this helps a bit. It helps me to look forward to tomorrow. With a heart full of love one can go through any storm.

Sandy.

 

[xsparklingwinex]

Thank you Nicole. As far as this forum being full of a wonderful bunch of people, I am clearly seeing that just by the heartfelt responses. It's funny you should mention being afraid of marraige because I was too.... Tremendously lol but you only live once and I love this man so for once I am going to beat my fear and embrace my happiness As far as your situation goes, as long as you both are happy then everything else will fall into place in time and who knows.... Maybe someday :Wink: Thanks for your response hun and good luck with your hunnie Love, *Holl*

 

[xsparklingwinex]

Hi Hope,

I completely agree with your outlook on love and marraige. I am very excited. I am really sorry to hear about your husband but I am glad you have a nice place like this to come talk with others as well. I really appreciate your kind words and advice. I try to live day by day and most of the time, I am very happy... but there is always that once in a while that gets you. As long as I snap myself out of it, the World is wonderful. You seem to love your husband so passionately and I am looking forward to a life filled with that same love, appreciation and passion. Thank you again for your response Hope.
Love, *Holl*

 

[saras_daughter]

CONGRADS TO YOUR UPCOMING WEDDING!

you will have to post pictures, friend! I just love weddings!

my advice to you about your future hubby, and this disease is simply life is life...

there is no way to protect him or anyone else from whatever this disease does/does not have in store for you, for your family.

Instead of trying to 'protect' him, you can educate him by allowing him to just love you like he wants to! How wonderful it is to be in love, and be married (I have been happily married to my knight in shinning armour for 4 years)

I do not have ALS, but my SUGAR MOMMA did, and there was no road map as to what to expect, etc....there never is with ALS, as I am sure you know by now.....

I would write in journals, if possible...talking about whats going on with you in your life, heart, mind and everything else...those things are so valuable when trying to see how this disease is doing in your life...

just live your life 100% all the time like its your last day........because whether someone has ALS or not, it can very well be.

oh hon I am so excited for you!

many many happy years!

 

[xsparklingwinex]

Thank you! Your advice was very enlightening. I appreciate it. I'm sorry to hear about your sugar momma. I hope we can chat sometime

 

[LittleHeart]

Hi xs
Im new here but have to agree with Hope.
I married my husband in Dec against my familys wishes.He has had ALS diagnosis since March 2003.
Its when you look at a person and you see the person not a disease that you know its love.
The only advice i can give you is the advice that i took myself.
That is to educate your fiancee on the horrible disease.
Congrats and best wishes on your upcoming wedding.

 

[rbtro]

Hi Holly,

Welcome to the club, as GrampAl says sorry you have to be here. I just wanted to say congratulations on the upcoming marriage. I only hope that you can enjoy a long and happy one as my loving wife and I have. Celebrated our 33rd anniversery 4 days before my diagnosis. I say I am testing the vow about in sickness. Luckily my wife feels blessed that she is able to care for me. I can't imagine being so young with this disease. I only pray that God grant you and your partner the strength to deal with it. I pray that you live long and prosper. May the researchers find a cure and improve the prognosis for this horrible disease. May god bless and keep you.

Your friend
Rich

 

[southern lady]

Go for it Holly!

tRUE LOVE IS RARE & PRECIOUS. We have been married 47 yrs. & my diagnosed has only deepened our passion for each other. I'll share more about that latter.
Bedtime now. Best wishes, Love, Mollye

 

[Jeannie]

Hi Holly, I have sent you a private message :-D

Jeannie x

 

[xsparklingwinex]

Thank you all so much for your kind responses. I agree with the fact that we have a deep relationship. He is such a gem. He is completely aware of how ALS works. He actually traveled with me to Washington DC for an ALS convention. Although, I wish to God that none of you had this horrible disease, it is such a relief and comfort to me that there is someone to talk to that knows where I am coming from and how I am feeling. God Bless you all and take care I truly appreciate your time and it was wonderful meeting you all.

 

[jhviv]

congratulations, Holly

I got married to my partner (in Massachusettes) this summer, a year after his diagnosis. I'm 30 and he's 40, so we're still both relatively young. the one thing that I will say from my experience, is that he has to have someone to talk to other than you. I found a wonderful therapist to whom I can express the worst of my fears. It's helped me immensely.

 

[sufernan]

Congratulations

Wonderful Holly!
I wish the best for you and your husband. I also got married to a man that had ALS. It was the most wonderful day of my life. I followed my heart, and that is the only advice I can give you. Listen to your heart and follow what you hear - not fear.
I had 3 wonderful years with the most amazing man in the world. I found and felt true love. Have a terrific day and I will be holding you and your husband in my prayers.
Sunny