Trying to digest

[georgifisher]

My partner was diagnosed with ALS 2 weeks ago. We are both very young (she is 27, I am 2 and we never even suspected that the diagnosis would come back as ALS. She underwent hand/arm surgery after starting to experience palsy in her right arm. The ortho doctor told us that she had a pinched nerve. After surgery, the palsy continued to get worse and spread into her left hand.

I'm trying to digest what ALS will mean for our lives. We recently bought our first home, a beautiful 1900's row house, which we are now in the process of selling because it is not able to be transitioned into a wheel-chair friendly place. We are getting married next week and decided to continue forward with that. I'm having a hard time knowing how to continue to move forward with life and not spend every moment of every day dwelling on the fact that I may be living life without my partner one day. There have been many nights since her diagnosis that I'll wake up and put my hand on her stomach to make sure she's still breathing. Its totally rediculous because she has no problems with breathing/swallowing and has just been diagnosed, but the fear is ever present.

I guess I'm just wondering how other folks managed this time right after diagnosis. I'm also curious to know how you continue to live life, make plans, and live without fear after receiving this diagnosis. My partner is a nurse and I am a social worker - we've always felt incredibly prepared for anything that would hit us in life. This diagnosis has left me very fearful and helpless feeling.

[BethU]

I am so very sorry that your partner has been diagnosed with ALS. It is especially tragic when it hits one so young.

It is an overwhelming diagnosis to deal with, especially at first. I just shut down emotionally for the first several weeks when I was diagnosed, and didn't want to see people or talk about it. It can take a long while to wrap your mind around this thing.

The thing is that you both will soon find yourself busy doing paperwork, meeting representatives of the ALS America and Muscular Dystrophy associations ... you will find a LOT of support and assistance from these organizations ... and seeing doctors, learning about clinical trials, finding out ways to slow progression, etc., etc. I think the busywork helps us get back on track and start learning to live with ALS. You can live a very rewarding life with ALS, and many people live for years after diagnosis. There are challenges, but they can be met.

I am glad you found this forum. There are caregivers here who can help you find your way, and we all will be pulling for you.

BethU

[brendapals]

BethU is so right.

I think it took my hubby and me about 2 months to "settle in" to my dx on 6/3/08. I also am a nurse, and that makes it a little different I guess. Knowing what all the tests are, knowing what normal levels are, the old saying " nurses make the worst patients" came to my mind very quickly!

There is no specific "time" to let it all soak in, like BethU said, you will be busy getting involved with the ALS and MDA associations and plenty more paperwork stuff. For me, I got involved with the ALS walk close to our home, and it was almost a full time job for 2 months! But it was very rewarding to know that we were spreading awareness. And I will continue to do that, it's cool that my hubby and kids are doing it now too though.

Keep us updated, enjoy every day you both are given
Never give up,
Never let up,
Never lose faith,
brenda

[gimpydad'slady]

Brenda

I think anyone who has some medical background can make it insane for the docs. I was in medical school when my husband was diagnosed. When they started throwing out terms like bulbar, clonus, etc etc...I knew what they were talking about, (had just completed Medical Terminology) and the Neuro was taken by surprise. Our Visit was rather lengthy, but we had a 2 week wait for the 2nd opinion, and we were armed with lots of prepared questions. If our neuro was a drinking man, I am sure he made a stop on the way home or had a drink when he got home.

I agree that there is no specific time frame to adjust either. With us it was a rather quick diagnosis, because hubby had not complained about any thing out of the norm until his voice started slurring. He then started spilling the beans about other problems that I was not aware of, which promptly had us sitting in the doc's office the next day. Within a month of testing and Neuro visits, we were prepared for something neuro...but not ALS. For us, it was about 2 months as well, but still have days when its like "no way" he has this. But like Brenda, and BethU have stated. You get involved with the organizations like MDA, for us it was PVA and ALS of Michigan. We also participated in a walk close to home, it was our 2nd year. The support you find with family & friends is so rewarding. With hubby being a Vet, we are also constantly working with paperwork for grants, and other stuff. I am kinda on call for any Vets that come thru ALS of Michigan. The ladies know we have gone thru all the stuff, and I try to help others head in the right direction.

My feeling is life continues to go on. We have just decided that we are going to do the same. We have some control of how we spend our time, even though we do not have control of the disease. Humor and attitude I think make all the difference. Filling your life with positive things, helps keep us focus on being normal as possible. Each day we are blessed with we ask ourselves what do we "feel" like doing today....and that is what we do.

Sorry for the lengthy post.....

God Bless!

[pmbenb83]

Hi Georgi,
I am so sorry that your partner has been diagnosed with ALS. You have come to the right place for support. My husband was diagnosed March 7, 2008, but was having symptoms for several years. Thankfully, he has slow progression. Bad news like this definitely takes a while to digest and get your head around it. We are still coping day to day. I hope for both of you that you can and will continue to live each day enjoying your life together.

With this disease, there is still an unknown timeline that we are living, which in a way is a blessing in disguise. If we knew the exact day, we would be consumed with dread awaiting that day and not living our lives to the fullest. I used to cry every morning the whole way to work (45 minutes) and all the way home and then I had an epiphany... I don't want to mourn him before he is gone... I want to enjoy life with him as much as possible!! Grief will be there later, so don't spoil today worrying about the unknown. Ever since then, my emotions are more in check. Don't get me wrong, I still have bad moments, but they are not consuming me.

BTW, my sister used to own an old (1900) beautiful row house in Richmond. I think it was on Strawberry Street or something like that and my niece lived on Stuart. I love that area! If you haven't done it before, definitely do the Christmas tour... keep making plans to do fun things.

My best to you both. Take care.
Pam B in Va

PS - If you ever need to talk, PM me and I'll give you my number.