Overwhelmed

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liz

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PALS
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11/2006
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:shock: Hi everybody. I just got diagnosed two weeks ago and am overwhelmed. I'm a 43 year old mother of four kids aged 7 - 14. Am trying to help all of us adjust but it is hard to know just how much info to share with the kids. My husand is in his own shock and trying to help me too. I can't stop worrying about how we will all be affected by this. Any advice?
 

CindyM

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Hi Liz- I am so sorry you have this terrible disease. My thoughts are with you and your family. I am glad that you found us, as this forum is a great place to learn about coping strategies and vent the inevitable frustrations that come along. I am too new at all of this to offer much practical advice but there are others with a wealth of experience who will be checking in shortly. I am sure you will get a lot of support from this group. Please keep in touch. You are not alone.
 

sufernan

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We are here

Hello Liz,
I am so sorry to hear. My son is only two years old, so he did not know what was going on when my husband Daniel was suffering from ALS. To him his father was always in a wheelchair and that was just normal. The only suggestion I have is be honest but careful. This is a very devastating disease, physically and emotionally. Make sure you have friends and family around you that you can talk to and also your children. As an adult, it was very difficult to see my husband going through what he went through. I felt overwhelm a lot, but Daniel and I had three wonderful years after being diagnosed full of joy and love. Now, almost a year after he died, I feel him with us all the time. Laughing when we laugh and crying when we cry.
I am thinking about you and your family and I hope a cure is found and your life will go back to being normal again.
 

Al

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Joined
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Messages
7,960
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PALS
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Hi Liz. Sorry about your diagnosis but glad that you found us. Can I ask if you have limb or bulbar onset as that does make a difference in the answers to questions you may want to ask. I know it is a devastating time of confusion that you are going through right now. It seems so unreal and you wake up everyday thinking this must be a dream. This will take a little while to get over and then you will be able to function with a clear head. It really will take a bit of time to really sink in. We are here to help if you need us. AL.
 

liz

Senior member
Joined
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Messages
642
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PALS
Diagnosis
11/2006
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Al -

I'm not sure how to answer the limb vs bulbar onset question.

Thirteen years ago I was diagnosed with akalasia which is a swallowing problem cause by the base of the esophagus sticking shut preventing me from being able to eat. This damaged the muscles of the esophagus and was addressed surgically with a balloon used to dilate the base of my espohagus so that it is permanently open. Ever since then I have had reflux and swallowing problems, not severe but persistent.

Then about two years ago I noticed weakness in my right thumb and forefinger. My GP told me it was arthritis but over time the rest of my fingers and wrist continued to weaken so I went to a neurologist, about a year after symptoms began, to see if I had carpal tunnel. My first exam included an EMG, MRI , neck Xrays by a neursurgeon. The result - no clear diagnosis but rue outs on te carpal tunnel and anything like a pinched nerve. I was otherwise active including regular exercise swimming three to four days per week. However, I had broken my ankle shortly before seeing the neurologist for the first work up. After six moonths sof neuro eval I was left wit hmaybe it wan a brachial plexitis or maybe monomelic amyotropy (sp?). My right hand continued to wither - I can't grip, button, zipper, hod a heavy cup, turn keys, etc.

So I was scheduled for a six month follow up this October. In late August I had an episode where I went for a long, brisk walk and noticed my rigt leg seemed weaker than the left and the knee seemed to flex less. I had a cramp in my right calf for about three day after this. Then I had a similar episode around the end of September. Meanwhile I am still swimming about 1-1/2 miles 3-4 times a week. Then also the end of September I noticed problems with my left forefinger and thumb like how the truble with my right hand began. Then I realized that my right calf had never regained its girth that was lost when I had the broken ankle.

So all of this I presented to the neurologist when I had my follow up. He immediately suspected ALS, sent me to a specalist in motor neuron disease for a second opinion, and ran a more comprehensive EMG which detected probems in bot my legs as well as the right arm (he didn't test the left arm). The doc who gave the second opinion concurred that I definitely have ALS. I have been referred to a regional ALS Clinic and will start treatment there in a few weeks. A pulmonary eval is one of the first things they will do there. I started swimming again after taking the last few weeks off because I was so scared. I still feel good in the water but am very fatigued otherwise. Am also working full time. They gave me Xanax because I was so anxious and I take this in the a.m. but at night I prefer a drink or two and that is the only time of day I really can calm down.

Don't know what you can make of all that. I guess the folks at the ALS Cinic can shed some light on things.


Thanks to you and the others for your concern. I'm sure I'll be visiting often.
 

Al

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Joined
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Hi Liz. Bulbar onset is usually swallowing problems and speech problems. You've had the swallowing problems for a long time so I would suspect that your problems would be classified as limb onset. Next time you are at the clinic you could ask if you are showing any bulbar symptoms. There are a few of us who have a drink or two in the evening as a relaxer. As I said to my doc once, what's the worst it will do? Kill me? Ha Ha. He thought it was funny. Try to maintain your sense of humor , you'll need it. AL.
 

shelli458

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Ca.
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There is absolutely no way to prepare you for this.If you have no faith get it now,and I am not trying to scare you but my mom was so courageous and spiritual that it was as smooth as it could be.Why things happen is beyond us but this is just a shell(our body)and you have to see the precious things in life.God Bless you in your fight.shelli
 

Barbie4

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Hello Liz:

Hello Liz:

Sorry you are here, but hope everyone on here can be of some support to you and your family through this difficult time. My best friend was diagnosed with ALS in March of this year 2006 and she is 42 with three kids between the ages of 6 to almost 11. So very similar to you.
The first few months after diagnosis were horrible and there were alot of sleepless nights. Many people told us to take it one day at a time, and really that is all you can do. It has been an extremely difficult journey so far, but we have had some good times too.
You can private message me anytime and ask any questions you would like. We are 8 months into this already and am willing to help any way I can.

Know we are all here for you and thinking of you.

sincerely, Barbie :neutral:
 

John1

Very helpful member
Joined
Feb 25, 2006
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Hi Liz,

I'm sorry about your diagnosis. You asked for advice on dealing with it. The fact that you had symptoms for two prior to diagnosis and are still walking and swimming is very encouraging for your prognosis and suggests a slow progression rate. If it is any consolation, it has been six years since my diagnosis and I have to say that the first several months following diagnosis were the worst. My experience is echoed by many others. You need to grieve, accept and then get on with living. ALS means a major overhaul in life expectations but by adjusting to them and setting new ones, life can still be very rich and enjoyable. Many PALS report a heightened awareness of life and all it can still offer.

Best of luck on your journey.

John
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Thank you, John. I am having a lot of trouble motivating right now but hearing from folks like you picks me up a bit.
 

CindyM

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Hi Liz. You have a lot on your plate and it is natural to feel overwhelmed. Try to do something nice for yourself today! My thoughts are with you and your family.
 

GinaD

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Joined
Nov 14, 2006
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6
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PALS
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Oklahoma
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Okie Dokie
Hi Liz. I'm so sorry that you are having to go on this difficult journey. I guess I would just like to reassure you that this is not your fault, you didn't choose this and nothing you did or didn't do, caused this. When my father was diagnosed last year, my 14 year old daughter whispered this question to me, "Am I going to get ALS too?" I had no idea that those thoughts would even cross her mind. I told her that no, she probably wouldn't because her PaPaw's was not the famial kind and that nobody else in our family had ever had anything like this. But I also told her that it was one of those things that are totally out of our control so she shouldn't worry about it and trust God. My heart breaks for you and I pray that God give you the wisdom on how much information to share with your young children. I hope you have a GOOD day today!
 
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