My Journey

Lorie · 04-08-2008, 10:48 PM

First of all. Most of you know that I am a Caregiver for by sweet brother Tim with ALS. DX March 04. Tim had symptoms long before Dx.

This is very hard for me to post. And a few of you know about me already. So many of you praise me for Loving and Caring for my brother and the work I do as an ALS Advocate.

I would like to give you a little background about myself. I have Meniere’s disease (ears) since 2002. It started from the Shingles Virus in my right ear. I have Vertigo, Tinnitus and pain. I am clinically deaf in that ear. This was a hard thing for me to live with. In Oct 04, I had convinced myself I could not live with it. (if you can read between the lines). (we did not know Tim had ALS at the time). Then I got a big “Grip”. I needed to be here for my young daughter Amelia, now 14. And my wonderful husband of 21 years now. Little did I know at the time my brother Tim had ALS. So I was needed here for a lot of reasons. I am my brothers Lifeline, so to speak. He and my Family depend on me so much. So I am going to have the conversation with you that I had with Tim and my Mom and my brothers two weeks ago. They had no Clue. I did not talk about it. I could not burden my family with everything that is going on. And me being the Leader in my family. Please understand how hard this is for me. I am emotionally torn to do this.

My Journey: (Possible ALS)

In the middle of March of 06. I was a my computer, I started to have Fasic’s/Twitches. They felt funny and I froze for a moment. (of course I thought about my brother, who wouldn’t). Since I do not waller in my own problems and I keep going. I knew in my heart something was wrong. But as usual I just kept pushing and going. Then in July 06 I started to get mild muscle cramps in my Left Foot and Calf and Fatigue. I went to my MD. She sent me to a Neuro. He did Neuro. exam and EMG and NCS. DX: BFS and PN. I said ok. I seen him a couple of times and didn’t go back until late spring of last year 07. He sent me last June to a specialist that Researches Underlying Neuro. Muscular Disorders. Neuro. Exam, EMG and NCS. He said oh, nothing is wrong with you, I am going to have the doc. Do a Magnesium, Potassium and Calcium, B12 test. I said ok, Have my MD do it. She did. It was normal. I knew it would be. I told her I was going to keep her informed but I wasn’t going back to any Neuro’s unless I had to. But I know something was wrong. Also I have already had three MRI’s from the top of my head to the lower back in two years. Results: Clean

Feb 08: The cramps had gradually sped up and had always continued with the Fasic’s/Twitches. I have a lot of Cramping (not regular back pain) in lower back. Tightness/spastic in my Legs. I went to my MD. I told her, something is wrong. I need to go back to a Neuro. I told her I was not going to see Tim’s MDA/ALS Doc. I do not like him. So she knew a Neuro. personally in the same group. She had him come to the hospital to do my EMG and NCS. Results: Consistent PSW”S /Fibbs in EMG. No Neuropathy.. A lot of denervation in my lower back. So I go back to my MD for test results. If spinal Stenoisis is ruled out with MRI. (already had it). Results point to MND. So I go back to the Neuro. for exam. Extremely Brisk Reflexes. Slight Atrophy in my Left inner ankle. And light Atrophy on my right foot. And some weakness. He is concerned that I am exempting the same pattern my brother Tim did. Except Tim’s lost his hands first and then arms. I said ok, what we do now. So on March 28th I had a Muscle Biopsy. Two inches out of my right/back Calf. I had my stitches removed yesterday. So I go back to the Neuro. on the 23rd of this month for results. He will send me to Dr. Oh in B’Ham, AL. Four hours from where we live. He is also the one studying my Biopsy. My Neuro. is great by the way. So was the Surgeon.

I am now experiencing a slight kind- of- loss of sensation in my Left Foot and Calf. Now that I can talk with Tim openly. He said he experienced the same thing when loosing his hands and arms.

So my husband is upset with me now, because I didn’t talk about the way I have felt for the last 6-8 months. But I always put others before me. And besides without the test results, why dwell on it. I went to all the Neuro. and Doc. appointments by myself until the Muscle Biopsy. I seen no reason in talking it about and upsetting anyone until the test results starting combing back abnormal.

So as I may very well be facing my own Battle. I need support. I ask myself, how did I get here? What am I going to do? The one thing I want do is give up. Too many people depend on me. Caring for my brother at the same time and now this to! I have a lot of emotions right now. So I ask you, not to give me opinions on DX. I am in reality and letting the Neuro’s Dx me. If you would like to ask me questions or comment, that will be fine.

Thank you for being here for me. You are such a great group of wonderful people.

Lorie

Very sad right now.

mamaoftwo · 04-08-2008, 11:02 PM

Lorie - i am so so sorry to read this. I guess there aren't many of us online because you would have a slew of responses by now otherwise. You are such a valued member of this little community and you know that everyone here will do all they can to support you in this journey. God bless you for not wanting to burden anyone with this but the stress of keeping this all bottled up inside is not good for you. Your family needs you of course but that means that you need to look after yourself too. My thoughts are with you.

trying to stay positive · 04-08-2008, 11:06 PM

Lorie,
I just finished reading your post and I am still in shock. I'm sure I will be able to think of something to say and I'll post again, but for now I want to say that you are not alone and I am praying for you.
Sincerely, Linda

Icanmanz · 04-08-2008, 11:50 PM

Hi Lorie. I just read your post, and like the other posters, I am shocked. Is your brother Tim the first one in your family that came down with Als, or are there others? I am out of words right now. I know it is hard, but we must face whatever the Almighty lays down for us. Nobody wants this damn disease, and I hate it so, because there is no cure yet. My dear son left this earth waiting for good news about a "cure," and it never came. He is still heavily on my mind, but I have strengthened. I still miss him so, and I still ask, "Why him?" The pain will never go away. I guess my frequent trips to the cemetery is what is helping me. I hate to say this, but "Mom" is the only one that visits his grave on a continous basis. Sometimes I go out there just to stand over his grave, say a prayer or two, and oh yes, place my hand on his picture. He was, and still is very special to me.

Lorie, I will be praying for you and Tim, dear. Let's not forget, that our Father knows just about how much we can take. I know, dear..........................yours is overwhelming. It is way, way too much. PM me anytime, and I will be here for you! May God bless you!

Irma

Lorie · 04-09-2008, 08:12 AM

Irma, Tim is the first. That we know of. When I talked to the Neuro. He said when Tim became Dx with ALS, that became a part of Family history. And after reading again on the ALSA site. A history can be a Parent, Aunt or Uncle or a sibling. I was born after Tim. We have been through Hell and back so many times. I will began to Blog about us and our family. I will continue on just like I have. It appears to be slow moving like Tim's. I am just cautious when walking. Getting up and down. The cramps are bad. Of course the Fasic's don't hurt. They are just a reminder.

I knew this was going to be a shock to a lot of people. I just thank you for being here for me and understanding.

Lorie

olly · 04-09-2008, 10:27 AM

i am absolutly gutted by your news, i just can't understand how such a tragic thing can happen . you are such a valuable person to all of us,not just your family.
i have been sat here looking at the screen for the last 10 minutes trying to figure out what to say, i have so many emotions going on right now and the worst thing is this will be a 100 fold for you and your family. i am a christian and i know god has a plan for the future and i try desperatly to keep my faith, but devestating things like this that happen to such special people really tests my faith and i need to cry out loud WHY?
dont give up lorie, let us all pull together and love/support you in any way we can. its time to think of yourself more and let others help you for a change.
i have always marvelled at the dedication to your brother and to the als fight, the caring support you have shown to me and others on this forum, remember your not alone and are truly loved by all. i will try and pray for you and your family with all the faith i can find in my heart.
god bless lorie
caroline

vmd · 04-09-2008, 11:04 AM

Lorie:

I will keep you in my prayers as I keep all the members on these boards. Like you, I have kept many of my symptoms from family because I do not want to worry them. I have told others (non-family), but have not specified that I fear it is ALS. I especially do not want to worry my daughter and my ex-wife. I am the primary financial supporter for both of them and I need to keep working.

wright · 04-09-2008, 11:20 AM

All I want to say for right now:

You have helped and cared for so many in your private life and on this forum . . . you can be rest assured that we will be here to help and care for you. Don't be afraid to lean on those who are willing to help.

Lorie · 04-09-2008, 01:39 PM

Thanks so much for your Caring and Support. I keep wanting to cry, but I couldn't until I read your post Caroline. Then the Tears came. Caroline, I know what you mean about Faith. When I post on my Blog, you will see how our lives have been since childhood. Why do we deserve this? I have no reasoning for it.

VMD, You know then that I know how you feel. If you ever want to talk, just PM me. It was hard to keep this from my Family. Especially when Tim would say things like. What did I do to deserve this? I told him he didn't do anything. I wanted so bad to let him know about me. But I just couldn't, until I had to.

Wright, Thank you. I will depend on you Guys/Gals more. This Forum has meant so much to me. And I joined last year because of Tim. And I ignored myself. I just kept going, you can suspect this Disease, until the test start coming back abnormal that points to it.

I am very Greatful for having you all!

Lorie

stevef · 04-09-2008, 02:00 PM

Lorie

I am so sorry you are going though this. You are such a wonderful person and I pray for you that things will get better. I also wnat to say Thank You for all you do in trying to gain awearness for ALS please continue to do what you can in the best of your abilities. It is hard to keep the faith when bad things happen to good people but try and know God is there for you and Tim

God Bless
Steve

paula-jane · 04-09-2008, 02:20 PM

Lorie,

I just don't know what to say. You are only too aware of this disease as you continue to lovingly care for your brother. You are absolutely correct. ALS has to start it's history somewhere...
You are in my thoughts and I hope that you continue to let this forum support you. When you care for others, it's hard to believe that there is anyone left to care for you. I guess you will just have to let them in on your thoughts and fears because you are loved by your family and you are so worthy of their care.

cukita99 · 04-09-2008, 03:09 PM

lorie,
im sorry, why us good persons. i went through all my testing on my own n had never heard about als untill i was dx. my family dont understand what als is. they tell me i dont try to help myself. i hate when they say im lazy n doont try to talk. they think i dont put my part. it is so hard for me. i will try to help u in any way i can like u help me. will keep u in my prayers but i feel like god ignores me. take care. love lupe

Icanmanz · 04-09-2008, 03:59 PM

Hi cukita, just read your post. Please don't think God ignores you. He loves everybody. He loves you, and we love you, even if we have never met. We are all praying for each other. Bye dear, and God bless.

Irma

cukita99 · 04-09-2008, 04:19 PM

irma, so much has happen to my son n i, that i feel like the more i pray the more im tested. dont know how much more i can take. i still have faith.

vmd · 04-09-2008, 04:47 PM

Lupe:

Yes, God will test us, but we also need to have faith that He will give us the necessary tools to survive such tests. I'll pray for you and ask you to do the same for me.