Hello

• By msgar1ginny
• Posted January 22, 2008 at 10:27 am

Hi Amy, Its nice to meet you even tho the reason is this terrible disease. This site is wonderful but you should also join Living iwth ALS on Yahoo. All on there either are people with ALS or their caregivers. The information and love is amazing. I don't know how I could have survived without them. They also have a online book written for the newly diagnosed written bu those on the site. Another great place is patients like me.com. This is a great place for lots of things too. I would keep Cales info on it and if we needed to go to the hosp or another doctor I could just print it out and take it along. It saved us and them a lot of time. Please email me , Hugs, Ginny

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• By GaryJensen
• Posted January 22, 2008 at 11:22 am

Hello,
My name is Gary. I am 62 as of today and I was diagnosed with ALS about a year ago. I haven't heard of Living with ALS on Yahoo (I'll check it out) but I do belong to patientslikeme.com and that is a good place to go to get support. Amy, I know what you mean about how difficult this is for family. My wife is not only doing all of her chores, but all those manly things I used to do as well...like, take out the garbage, etc. And then, of course, there is taking care of me. A also have a son who lives in NYC. We have gone to see him for a week in April for the past 6 years. Last year I used a wheelchair at various events; this year I will be wheelchair bound. But I'm still going and looking forward to it.
Gary

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• By imamom
• Posted January 22, 2008 at 1:50 pm

Hi Amy!
I wanted to welcome you to the site. It is relatively new to me also. My name is Lynn. My only son Alex who is 18 and a senior in high school was just diagnosed with ALS last May. I am a pediatric nurse by trade but the mom in me is what comes out when I speak of my son. I look forward to sharing thoughts, feelings and experiences with you!
Lynn

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• By TheBorkFamily
• Posted January 24, 2008 at 5:53 pm

Ginny,

Thanks so much for your message... and the tips on where to find new info. That is one of the biggest issues, trying to find information as quickly as possible because time is so precious. We have come to relize that everything surrounding this disease moves extremely slowly while the disease itself progresses way too fast. It is so good to hear from others who are or have experienced the same types of things. Thank you, Amy

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• By TheBorkFamily
• Posted January 24, 2008 at 6:00 pm

Gary,

Thanks for your message. I am so sorry to hear about your diagnosis. My dad feels the same way about my mom having to work and do everything around the house. My brother is only seven and my other sisters are 12 and 14, so my mom is overwhelmed by being a mom, wife, nurse, and breadwinner; I think that's the toughest part for him actually. I will check out that site, stay positive... you are in my thoughts.

Amy

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• By TheBorkFamily
• Posted January 24, 2008 at 6:06 pm

Lynn,

(That's my mom's name too, but with an "e" at the end) I am so very sorry about your son. This disease frustrates me more and more everyday. ALS is difficult for all families but it seems especially cruel for it to strike someone so young. Keep fighting and take it one day at a time.

Amy

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• By msgar1ginny
• Posted January 24, 2008 at 10:58 pm

Hi Amy, I hope all is ok with you. Where are you located? I am in Western Illinois. if there is any way I can help I am available. One thing I will suggest is to do everything before it is nessesary. If the doctor says a feeding tube is needed--get it. Its hard to accept these things but delay sometime seem to bring faster progression. Also a powerchair takes weeks-sometime months to get. Another thing I want to mention is that Medicare will help pay for a wheelchair- but do not use this for a manual chair!! You only get help every 5 years and -I hate to say this but- in five years who knows where we all will be. So many things to learn but get into an ALS Clinic and also to the MDA. The MDA will give 2000 dollars toward the powerchair or a speech communication device. The chair can cost 25000 dollars and the speech device 8000. Accept all available help. Hugs, Ginny

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• By jennyhoff
• Posted January 26, 2008 at 2:12 pm

Hi Amy,

I am so sorry to hear about this disease taking yet another family. It truly does affect the whole family. My advice echoes all that has been said here. I am 49 and was dx 2 years ago. I have 6 siblings and a spouse, all who have been of tremendous support. Yes-accept any and all help and support no matter how difficult it may seem, and try to stay one step ahead of the curve. I know that the support group initially scared me off, but fortunately I gave it another chance, and it has been of great benefit to my whole family and I. I seek out any and all online ALS communities.

The only other words that I can offer is that as overwhelming as it may seem in the beginning, it does get doable. My perspective on what is important has been completely revised. I keep myself busy with learning more about others with ALS, and being involved in advocacy. I have had many good things and many blessings come my way since I learned to stay one step ahead of it all, and as odd as it sounds, embraced it. I feel as though I may be winning when I look at it that way. Do all that you can to make your dad laugh and love. And always know that here we are many in number that have walked in your shoes, and willing to help and support! God bless you all Amy, Jenny Hoff

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• By Chuck1106
• Posted July 25, 2008 at 12:24 am

Hi Amy,
Sorry to hear about the ALS in your family. It is very hard on us.
I was diagnosed over a month ago...and it is so hard.
I lost my job back in March, but kept going to the doctor to find the answer to my slurred talking and eating difficulties. When I was diagnosed in June, I was floored.
My wife was in dis-belief. But we have since come to terms with it, and have educated ourselves daily.
I plan to have a tube put in my stomach in Sept/Oct.
I have been losing to much weight, and I need to keep up my strength. I also want to do it before it becomes an absolute necessity.
My boys have put together a trip for me and we are all flying back to Memphis for a family reunion next month. I was so surprised, when they told me. I haven't seen my brothers in over 5 years, and the last time the family was all together was when my Mom died back in 1999. So it is wonderful.
Take care..Let me know what I can do....and if you have questions..I will do my best to answer them.
Prayers for all of you.
Take care.
Chuck

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• By denisema
• Posted August 7, 2008 at 10:47 am

Hi, my mother lived with ALS for seven years and we all as a family helped to take care of her. If I could maybe help someone or answer anyones question I would be happy to do so. We learned a lot about how to care with loved ones living with ALS.

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• By alsgny
• Posted September 2, 2008 at 8:49 am

Hi Amy,

The national ALS Association website has a tom of information as well as your local chapter. You should get in touch with them and see if there is a clinic or certified ALS Association center near you. They can offer a wealth of information. Check out the Greater New York Chapter website for the information we have and please find us on other social networking sites, where we post general information gleaned from research, news, etc.

www.asl-ny.org

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• By Leon
• Posted September 3, 2008 at 7:47 pm

Amy,
I truly am trying to give this group a second effort as I reply to your post six months late. Whatever the timeline, I relate to you and all your family members. My dad died 20 years ago of ALS. Our family knew very little about ALS and any information we learned came from the local library. My Dad had limited knowledge about ALS but understood the end result.
In 2004, I was diagnosed with the same disease. It only took a matter of hours to learn that the Familial ALS gene had finally been identified. Unlike the days of my Dad, we have a better understanding of ALS, improved therapies and one group that continues to keep pace with ALS. The ALS Association knocked on my door and has been a well-rounded source of guidance over these horrid years. I do hope by this time you have joined a support group and have obtained sensible and sound information about ALS. The ALS Association provides many outreach programs that did not exist for my Dad or our family.

God Bless,
Leon

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