New on Here, Mom Diagnosed Yesterday

[wijodo]

Hello,

I found this forum online a few weeks back. My mom was diagnosed with ALS yesterday at Vanderbilt in Nashville. She has been declining slowly over the past few years and has seen multiple doctors along the way and been run through all the tests. What started with foot drop had moved to both her legs. The doctor at Neurology said that the foot drop was a separate issue not related to ALS. But she has lost use of her right leg and foot entirely and can only slightly move her left foot and left leg. Her hands and arms are showing signs as she has lost strength in both. I have done what I can do through this time but will do more,I am an only child and I work full time and live about 25 minutes away, but am over to work on the house and help out during my free time. My Dad has been the primary caregiver. Over the last year she has needed more assistance to get into the bed and when using the toilet. She has a hospital bed and has been in a motorized chair for the past couple of years. She has wonderful friends who have helped as well. We built a deck for her to get out of the house a couple years back and she was able to find a van with a lift when she could no longer transition from the chair to the car.

I guess I am saying that we are scared and we are trying to figure out the next steps. She goes to the ALS Clinic today to find out more information. The doctor at Vanderbilt said 3 to 5 years. She thinks that this means 3 to 5 from November 2006 when she first started getting foot drop.

I wanted to introduce myself on here and have found the threads I have read so far informative, any advice would be greatly appreciated. We are all brokenhearted as we are a tight knit family of 3, now 4 with my wife of four years.

God Bless

Will

 

[abbas child]

Will, I imagine the Clinic today will address a lot of her needs. I think you should not think in terms of 3 to 5 years, because the fact is, our lives vary so much in terms of span... it is not that predictable, and I've had 5 and a half years since my symptoms began, without becoming anywhere near dying. I also started with foot drop, which slowly then affected all of that one leg, turning next to the other, then began to spread upwards. However--there is no set pattern whatsoever.

It seems that reading between the lines, your mother has been ill for quite a while without a diagnosis... and ALS is not what was hoped for, I'm sure. Your being here will bring you a lot of support and hopefully, information.

Please tell your mother that we don't know how long any of us will live. It's ordained by God. As a missionary Jim Elliot wrote, we're immortal until God brings us home.

Let us know how it goes today at Clinic. I'm so glad there is one available for your mother. We will want to hear about what you learn.

Ann

 

[TedH5]

Will, first let me say how sorry I am that you and your family are going through this. I will tell you that Ann has given you excellent advice and insight. (as he always does) This disease is very unique and the way one person progresses is much different from how another person progresses. You can not open a textbook and say at 6, 12, 18 months etc this will be your symptoms.

Hopefully the Doctors will be able to answer your questions. Please don't think of it as the time you won't or don't have but rather as the time you do have. Just because someone has ALS any number of other things can impact us just like everyone else. Therefore for all of us each day is a gift. There are no guarantees in life. It is obviously very dramatic and overwhelming when you or a loved one receives the diagnosis. Just remember there is life after diagnosis.

We are here for you, please feel free to come here whether with questions or advice or for comfort, we are here for you and happy to help in whatever small way we can.

God bless you and your family. We will be praying for you.

 

[CAHPAH]

Will
So sorry to hear about your mom. She is fortunate to have you and your father to take such good care of her. I know that you will find this forum a very helpful place, full of caring people. Sending you the very best wishes.

 

[Lavender Lady]

Hi Will,

Thank you for sharing your moms story with us thus far. Please let her know that we all care here and that it is a very helpful sight to ask lots of questions and to read about previous posts that are helpful as well. She is lucky to have you.

 

[John1]

Will,

Ann has given her usual good advice. It sounds to me that the doctor has given you the text book estimate of longevity with ALS. In fact I believe the best predictor is rate of progression before diagnosis (as well as subsequent). If your mother has progressed slowly for some years, she can have every expectation of continuing slow progression. I would toss his estimate in the trash. I wasted the first few years after my own diagnosis expecting to die soon based on statistics. Didn't happen. My advice to you and your mother is to enjoy life as it unfolds, not be overly concerned about future events but take reasonable steps as times goes on to be prepared for the next stages of progression. I think most people here would agree the worst time psychologically comes in the first few months following diagnosis.

John

 

[brooksea]

I wish you and your family luck, Will. Docs aren't always right are they? Hang in there, my man! You sound like a wonderful son for taking such interest!

 

[wijodo]

Thank you all for your responses. I am happy to have found such caring folks and your insight and prayers are very much appreciated. I will follow your advice and hopefully my mom can get to the point where she looks at things day by day. They went to the clinic in Nashville, but at this point are still overwhelmed and are still digesting it. The local ALS chapter in Nashville has been very helpful. God Bless you all and I will be praying for you all as well!

Will

 

[Katie C]

Our experience (and that of others we've talked to) was that for the first couple of months, ALS is our entire world... then we started making more educated decisions.. if something seemed to make Glen more tired than it did provide comfort or relieve, we just didn't do it. We settled into a routine, found medical personnel that truly cared and that we could work with... no, our lives were never the same, but we did find a new "normal" and hopefully you and your family will be able to do that.

 

[Phil's wife]

Will, so glad you found this forum, it has helped us quite a bit in the last 6 months since my husband was diagnosed. We also go to the ALS clinic at Vanderbilt. We really like all of the doctors and staff that are a part of the clinic. They will always take the time to explain and educate. Your mom, you and your family will be in our prayers.

Stephanie

 

[Al]

I was diagnosed 7 years ago next month. Still eating,drinking and terrorizing southern Ontario. Statistics can lie, docs can be misinformed. Live for today.

AL.

 

[tdamess]

I was diagnosed 7 years ago next month. Still eating,drinking and terrorizing southern Ontario. Statistics can lie, docs can be misinformed. Live for today.

AL.

your the man ,

 

[cris]

Sad you had to find us this way but you will find friendship and advise here wheneveryou need. This is a great family here.

Remember this is a disease that they Don't have the answers for yet. Dr's are Not all knowing. They are human too. If you feel that wht they have told you to do doesn't work for your PALS then Don't do it! With this disease 'common sense' is your best tool. That and the people here!

God Bless!

cris