Lost in a daze

[Hataltul]

Friday we went to the ALS clinic and recieved a definitive diagnosis. ALS. We had anticipated this but still held out hope it might be something else. I feel like I have been hit straight on by a brick wall.

The clinic has a good support program and we are going to get started as soon as possible. I am finding we are having to change the way we see things. Instead of planning for retirement and a life together for many years, we are now planning on ... well I think you all know what we are planniing now.

Our wedding is in 3 weeks and so we are putting all our attention on that for now. We have appointments with an attorney for the legal stuff and will be getting involved with others in our area with ALS.

All I can say, and pardon if I yell. IT ISN'T FAIR!

 

[beverly rees]

Hi Hatatul,
I am so sorry that you received this most devastating diagnosis. My husband was diagnosed in Octobe 2008 and I felt the same way as you do now. I was totally shocked as he has always been a very healthy person and his mom is still in good health at 94.

Although David has significant weakness in his hands and arms, we are still enjoying our lives. We have made alot of new friends with our als support group which has been very helpful. Some people in our group have had this disease for over 10 years and still doing relatively well. Please do not give up hope as they are always working on research. We have been involved with ALS TDI in Cambridge, Mass and they are working diligently on a cure. Also, we recently went to an als seminar in which some of thee top neurologists in the us feel that the cure will be found in the next few years. So please do not give up hope. Do enjoy every day that you have together and especially enjoy your wedding day. Bev

 

[pepsiman]

I will never forget when Liz received her diagnosis. I felt like I had quite literally been kicked in the stomach. Although Liz knew beforehand, I really didn't believe it until the doctor looked us right in the eye and said "You have ALS, there's no need for more tests".

I can't offer you much. Yell, scream if you must, but then plan ahead, far ahead. You can't know the time frame, but you can read here and know what's coming. Do everything you can to make the most of your time together. Plan way ahead for caregiving help so you don't burn out. It's the one thing I most regret, not having help when I needed it. It's hard to hold on to the love when you're caregiving 24x7, it's still there but the stress overshadows it. Have help available so that doesn't happen.

Dick

 

[Miss]

Dick is spot on. Prepare for help - ahead of time, and get more than you think you will need. Holding on to the love is okay, but it is VERY, VERY hard to continue to LIKE your PALS when you are caregiving 24/7.

 

[Hataltul]

Thank you for your support. I do plan on getting as much help as I can, family and "Share the Care" here locally. We have a good center in town, the best I've heard in the northwest. The doctor says one of the things the IDG does is to keep one step a head of the game, anticipate. I will be decreasing my hours at work to 32 a week so I can take time to go to doctor visits and spend time with my PALS. We are OK so far financially, and have a lot of support with family and friends.

It is just so overwhelming, sometimes I feel like I can't catch my breath.

Thank you all for your comments. I will keep in touch.

Deb

 

[brooksea]

Deb,

Sorry about the diagnosed.

Good luck with your wedding!