My Journey

[freddiesnetty]

Oh my, I am speechless!!! I have cried and cried till I have nothing left I thought, this makes my gut wrench, I have been gone awhile and have not been doing so well since Freddie passed. I celebrated his what would of been 50th. He wanted to come to his 50th, he had been getting in the chair with my persistence. I had his party last nite and all his peers came and played.....He (in his urn) stayed on the stage all night.
Then today I come back to the spot where I kept my sanity to find one of the strongest and kindest women I know I facing the same damn fight that she fought so hard for her brother. I hate this disease it is so unfair, Lori pm be and we will speak via phone.....

Hang in there you are truly a ray of sunshine to all!!!

Hugs and more hugs!!!!

netty

[Lorie]

I am sorry it took so long for me to reply. I sat here now and read all the encouraging words, for me. Tears are Running down my face. Thanks to those that have pm'd me.

The Nerve Conduction Study was good. No Problems.
Fasiculations Not Benign.

The EMG Not good at all. From the time he started with my left foot up to my neck, not good. A lot of Fasic's and Positive Sharp Waves and Fibbs in areas. Extremly Hyper Reflexes. I have lost 1-1/4" in my left Calf in the last year. I could go on! Doc was smiling when he came in the room. He was not after the test. He is having me do another MRI on the Cervical and Lumbar areas on Wednesday as the last rule out test. Last year they were fine. He said if those come back ok. We will talk DX.
He was looking in a DX book at the counter where he told me to meet him and get my appt. for the MRI. He made sure I did not see what he wrote and turned the paper over and handed it to the Nurse. He would not look me in the face. He said, I am sure I will see you soon!

The Doc. said to me MRS. Walley, you knew something was wrong all along, didn't you? I said yes, I am not here to convence you. I haven't been to you in a year, even though I was to come back every month. I waited until I knew things changed and I could handle the enternal symptoms with my Meds. But, when people see the changes that I cannot hide anymore. I said, when my calfs are not stiff and my fifteen year old daughter calls my left leg from my knee down through my foot, the Anorexic leg. My husband sees my left hand tremor after trying too hard to do something. And fusses at me for lifting grocery bags from the car to the house. My ALS brother says everytime I walk, it looks like I am going to fall. I have dropped many drinks on him when holding them in my left hand. I said ,I guess it was time to come back, don't ya think??? I told him that what ever I had was moving like a snail, like my brothers very unusually slow progression. He agreed!

I was talking with my husband last night. I told him the only benefit I have is that like most people that get an ALS Dx (if that is it) are shocked and horrified and should be. I said I already know what it is like. So I am not hit upside the head by a brick wall!

When I find out, I will not tell Tim at all. I will not tell my Daughter until I absolutely have to.

My extended Family here on this Forum means so much to me. Those of us that are there as PALS or CALS. In my case maybe both? Can you imagine that? Wow, quite remarkable I think! I am making it work. It will take an army to bring me down.

Love to ALL,

Lorie


Remember this that I posted the other day under research news: Classic Example!

http://news.health.ufl.edu/news/story.aspx?ID=5332

[hopingforcure]

Lorie,
I am so grateful that you wrote this evening. I have thought about you all weekend.
I am sorry to hear that you had a abnormal emg. I know that is worriesome. I am backing on whatever you have been slow, I feel like my family follows your story similarily.. Maybe we will be the people to do studies on, and we can find out how to slow this thing down.
When do you go back to doc? do you have to get more mri's ??? I know what you mean my son calls my hand the pin hook hand.. he says it looks like a hook, and can be gone through with a pin.. oh the joy of these fine bodies. you have been so brave and strong, whatever ails you will not find a easy oponent, one who know both sides of the story... LOOK OUT ALS... I am thinking of you, and sending love and hugs, we are here for you, whatever support we can provide, it is yours.. we need each other.... my heart goes to you, but you are going to be ok.. we are going to do this together my friend...you me. Olly, Jenny, Al, Mt, cj, etc.... a boat load of friends are here for you.. we are all in...

[Lorie]

Yes I go for MRI's on Wednesday morning.

By the way, just to put a little pun into it. I asked the doc if he wanted to stick the needle in my tongue since I have Fasic's there? He said are you kidding? I said no!
He said it wouldn't be needed!

I think I am going to E-Mail the doc. at the University of Florida to see if he wants to study a real life person. I will be a guinie pig for researches! There is also one going on in Atlanta at Emory University, I think I will E-Mail them to.

I wil continue my involvement in ALS Awareness and Campaigns and Fundraisers. I want to do one for Stu. He want answer me so I go at it alone/ and with the help of a very lovely young friend Stephanie. She says that I am her Mentor and that she looks up to me and wants to be like me. I told her I will teach her all I can. Her Dad has PLS, she use to come on the Forum. We don't live for from each other.

I don't just talk about ALS. I take action!!!!!!

[joelc]

Still praying for you my dear! Whatever happens I know you will have the strength to handle it!

[Lorie]

Like my husband says: Hell hath no furry when Lorie Walley is on a Mission!

We shall Conquer!

Lorie

[Lorie]

PM me your number again, I think I have it right. I have tried to call before after Freddie passed. I will call when I wake up and talk while I have my Coffee.

My Heart and Sould goes out to you and your children.

Lorie

[sdsyd]

Lorie-You are such a brave and confident person!! Best wishes and prayers as you look this thing square in the face.

Lots of people pulling for you-

Love,
Cindy

[MtPockets]

Closest thing I can come up with for a group hug from us to you.

[olly]

hi lorie.
i was hoping so much for good news for you.
you know we are all here for you and care about you and tim.
lorie needs to take care of lorie more,you are no good to anyone else girl if you push yourself too hard and end up a mess.
you take too much responsibility on your shoulders............nows the time to deligate.

[sharonca]

Lorie - I'll pray for you on Wed. It does help me in my mental condition to try to find ways to help others. You are amazing.

[Lorie]

I am just taking it one day at a time. That all I can do. I make them the best days that I can. I was at Mom's this evening and all Tim did was cry. He is so miserable and Sad!

It reaks my heart. I don't want him to know anymore than he has already figured out.
He said tonite that if he lost his sister he might was as well be dead. I just want to KILL ALS! I hate seeing my brother or anybody else suffer like this. As long as I can, I will continue to keep putting people/projects (als) ahead of me. That is just my nature. Especially the things I care about.

Please come together and PRAY for him! That is all I ask.

I worked in my yard today in the hot weather and then swam 12 laps in my pool in between foot and leg charlie horses. And did aerobic exersises. I said keep on cramps, because I am not stopping. Water is a good low impact exersise. So I am going to try to make it a habit. I am not giving into NOTHING!!!!!

Lorie

[sophiaa]

Lorie---
I have followed this forum for about 10 months now but just started posting recently. I just want you to know you have to be one of the kindest,strongest,generous human beings on earth!!!! I am amazed and encouraged by your strength and commitment to your family. I pray your MRI goes smoothly for you tomorrow. I will be thinking of you----your life has really impacted me.
Sophiaa

[Lorie]

Sophiaa, Welcome! I am feel so greatful that I may have had an impact on you an brought you out from behind the sceens. This is a wonderful place to be. We are a community that gets what we are all going through. I appreciate the encouraging compliments that you have given to me.

I was at Mom's the other evening helping and talkng with Tim. He fell asleep so I went outside with my family and a few friends that were there for a coffee break. I was listening to the conversation. Somehow it turned to me. A freind of the Family stood up and said to everybody, What is there to not like and love about Lorie? She said she is REAL! They said nothing, we love everthing about her. I don't dwell on my Goodness, I just do it. I don't look for recognition. One of my brothers said its a wonder that I haven't been nominated as woman of the year, some how. I was quite overwhelmed.

Tim told me that even though Angels don't come in human form. God accidently sent me here as one.

My brother Ronald told me months ago, that I was the Root and the Tree of our family. If I was not the Root and the tree. There would be no Limbs. (them)

So I appreciate all the good things that are said about me. I am an action person. I don't just talk. I do it. What ever it is. My main mission in my life is helping Tim through this process and working for ALS. I am in a mind over matter mode right now.

On to MRI results: The Neuro nurse called me Monday and told me that the only thing between the Cervical and Lumbar MRI was a very small bone spur in my neck. Cervical was fine. But not on the EMG. Because he told me when he was taking the EMG. The spur may cause me a little pain, but it was nothing to do with my symptoms. I said, what about my EMG. She said Dr. Markle dictates them and then gives her the report to type up. I said do you know what the results were? She said she could not tell me at this time..... I know that he probably waited until I had my MRI's.
I had just awakened when she called so I didn't get in what I wanted to say.
I assure you I will. I am not going to DX myself with anything. The test and my symptoms will do that. Yesterday and today I fell from my left side. Fortunately, I had something nearby to grab and hold onto. In the last few days, some of the toes on my left foot suddenly felt like they were not there. I lost balance. I told the Doc. I feel like I have to crunch my toes under when I walk to keep sturdy and balanced.
We will know sooner or later.


I will go back a week before my initial Neuro. appt. Not the EMG appt.:

I had not been to the Gyno. in two years. I had found a grape sized lump in my left breast. I went through extensive test. It is just a cyst. I asked my Doc. to check my Uterus (the only thing no checked) for maybe it had dropped or become unattached in some way. Maybe that had to do with all the denervation from the EMG in my lower back. She did a thorough check and said everything is where it should be. No problem there.


So here I am in LIMBO LAND that so many of us have been through. I know my body.
Like I said in an earlier post. I did not talk about my symptoms hardly to anyone. I took my meds and PUSHED! Things started becoming apparent to other people.

Everynight I empty my emotions from that day. So the next moring I can start a new day fresh and deal with what is to come for that day, whether it is with Tim or myself.

I am very tired right now. I am sorry this post was so long.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking. It is not easily angered, it keeps no record of wrongs. Love does not delight in evil, but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. I Corinthians 13:4-8
Lorie

[sharonca]

Lord, please bless Lorie for today and tomorrow and the days after that. Amen.