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VoiceforLinda

Distinguished member
Joined
Jan 9, 2011
Messages
178
Reason
PALS
Diagnosis
11/2010
Country
US
State
AZ
City
Phoenix
Hello,
I was diagnosed with ALS on November 30th, 2010 after two years of having difficulty speaking, breathing and choking. I turned 50 on January 21st and my husband took me to Hawaii to celebrate. We have never been able to do much traveling as our financial situation has not allowed us to but we felt it was time to make some sacrifices in light of what we have ahead of us. A life long dream of mine was to swim with the dolphins and I was able to have a private session while we were there. Since my symptoms have been mostly bulbar I didn't expect to have any difficulties in the water. My experience was quite a revelation of how the weakness is now in my legs and arms. None the less I had an amazing time and I am so very grateful I did this now and didn't wait as we had planned.
My next appointment after my diagnosis is tomorrow and I am feeling a bit anxious. I feel privileged to be in Arizona and able to be treated at one of the finest facilities Barrows Neurology Institute, however the unknown is still very scary. I have been reading the posts and the problems people have with this disease and I find it very overwhelming. I am a new grandma, first grandbaby born in December and my inability to speak to my grandson is more than I can bear. I am entering the angry stage of my diagnosis. I try to stay strong for my family but I need an outlet to let my tears, fears and screams out. My husband who is extremely supportive is really in denial. The doctors made a mistake, God is going to heal me and the Hawaiian air will make it all better. I feel myself getting weaker and from what I have read this is terrifying. I have always been a leader, self sufficient and a caretaker of others. I don't know how to be ALS. I don't want to be ALS. How does one grasp this? I can't even go there but my body is doing this without me on board. Does anyone understand what I am saying?
Linda
 
Welcome, Linda. You came to the right place for comfort and advice, as well as a place to kick and scream and stomp around all you like. I am not the one with ALS; my husband is. I think we hold out hope that if we don't acknowledge the monster, that it will be a mistake. I am so sorry that you are feeling so alone in this. Unfortunately, you have lots of company here. Hoping you are able to get some peace by talking with the other wonderful people on here who also have ALS
 
Everyone here knows how you feel. We have all been there PALS and CALS alike. Let it out. Scream, yell, cry and then move on with your day. We are here for you.
 
I know exactly what your feeling. I could not have gotten a worse disease for my personallity. Not much we can do about it though. Take it day by day is all you can do.... God bless pals.
 
Oh yes, I know how you feel too Linda. I am about to turn 50, not till November actually, and our second grandson has just been born. My voice troubles are only just getting serious, but I use a power wheel chair. I rather liked the honesty in your post Linda. I get the feeling that you will soon bring your courage and leadership to bear on your situation, and perhaps you wont feel so out of controll then. I hope and pray that you and your husband move through all the denial and anger and are able to cherish each day.

Blessings!
 
Welcome to the forum, Linda.

There are many people on this forum that know exactly what you are feeling and can be of great encouragement. The angry stage will diminish in time.
 
Hi Linda,

Just wanted to say you are not alone as to how you feel. It is not me with ALS but my mom.
 
Linda I am sorry you are going through this. Just remember you are not ALS it is what you have. Stay strong and keep the faith!
 
Hi Linda,

We sound a lot alike - diagnosed about the same time, about the same age, one grandchild and a son getting married in November. I guess the best thing I can say is you not only don't have to be ALS, you can't be ALS. You have to be Linda, sure it'll be different, but you can still be you. Don't let the disease take that away, I know you can handle this. Go ahead and vent > get the anger, frustration, irritation, hurt, sadness and fear out. Praying for you today!
 
i have felt angry for almost ten years. at least ur husband is by ur side mine left me. my only son is 21 n i will probably wont see grandchildren. thanks to me, he has spend his time caring for me so no girlfriend. my big family could care less.
 
Aloha Linda,
I'm a newbie here, but I understand what you are talking about...there's different stages of the illness, yeah it sucks, but we gotta make the best of what we have in life and live each day to it's fullest. I'm so angry that I want to scream each day but then I think...wait, be thankful for another day of life, I thank God that I have a loving family... I'm married with a 19 yr old son and a 16 yr daughter. My husband works FT and does everything around the house. I might not see any grandchildren but I'm still thankful that I get to enjoy each day with all my family. we try to have monthly gathering at our house just to keep in touch and enjoy our Ohana. I feel sorry for my husband, he's now a maid,back up driver for my daughter,financial planner,grocery shopper,yardman etc... I thank God everyday for my husband and children. I am still blessed for the life I was given and have no regrets. I am 45y old this past Dec. Stay strong and keep the faith.

Aloha....
 
It took abbot a ear till I got my ALS diagnosed. I knew it was a possibility but held out hope for something different. I'm 52 so I was 50-51 when my symptoms started. My husband is also very supportive but also refuses to accept this diagnosed. After wards we found put I also have scleroderma and it causes some similar symptoms so now he's hoping for a misdiagnosis. The anger you feel is normal and part of the stages you go through. I know that God will not give me more than what I can handle. He have me a good husband to take care of me so I'm blessed. Take Care, Cathy
 
Hi Linda,
Welcome, I know exactly how you and your husband feel. I was diagnosed last March after having symptoms for 2 yrs
and several work ups. I was almost relieved to have a final diagnosed and then went through the stages denial, acceptance etc
and I am still going through them,it is normal for us. I was lucky to be here for the birth of our 2nd grandson on Thanksgiving
Day. I am glad you found us, you will find answers, prayers,love and support on this forum.Taking it a day at a time is good
advice. Conserve your energy whenever possible. blessings, Pat
 
Linda,

I want to welcome you to this elite club of "ALS PALS and CALS"! We are "special" people who have been challenged to adapt to this demon disease. We are not ALS. We may not do what we use to do, we have tried, and most succeed, at thje adaptations this disease requires. Thus we are still "US" - just being different.

Our minds, in most cases, remain sharp, and that may be the hardest part of battling the disease. We know what is happening today to our bodies and fear what COULD be happening tomorrow.

Personally, it has taken me more than a year to find peace with what I am now. Like you, I was active, always the go-to person, and a caregiver for those less fortunate than me. Being cared for, was never in my plans. :) I was a planner, an organizer. Now I have learned to live each day without planniong and allow others to organize for me.

I am filling my days with reading, teaching myself how to scrapbook on the internet so that I can leave a memory chip of my life story for my grandchildren, and I now nap (something I NEVER did before!)

I spend more time being thankful for the friends I've made along the way and the family that taught me how to appreciate the little things in life. I refuse to be ALS --but am using it as a way to adapt and take time to"smell the roses." I am also learning to be a patient and an appreciative patient. I recognize how much more difficult my disease is on my family as they watch me become less active.

So, Linda, you are entitled to your anger and frustration - but will discover that life will go on -- just differently. You will laugh, cry and love as you always have -- just differently. You will make new friends and lose old ones who just "don't get it".

Hang around us and you will find we are a mighty eclectic bunch but we share the same emotions and are all praying for a cure.

Hugs,

Diane
 
Hi Linda,

I also have bulbar onset, a Bulbarian. I guess I was lucky because I was diagnosed in just about 1 year from when I first noticed symptoms. I was always the one that people said sshh to and now I can't say a word. I understand the anger. I feel that since I am not able to speak that I can't release it. It is a horrible way to feel. I have also found that my emotions in certain situations are way more excessive than I think they would normally be. I'm not sure if it is a physical result of this terrible disease or if it's just me not being able to deal with things the same. I tend to think its the former because I am usually surprised by it.

I think I am doing better when I manage to stay in denial. I know that probably sounds stupid but I seem to be able to distract myself for short periods of time where I feel like myself and not the result of this damned disease.

My kids waited to get married my daughter was married last May and no signs of grandbabies in the neat future. My son has moved his wedding up by a year for me! He will be married at the end of May. I imagine I won't even get to meet any of my grandchildren. I try my hardest not to dwell on that.

Thank God every day for your husband! I am alone, although my sister has agreed to be my main caregiver. I don't know if she is going to be able to take it. I worry about these things all of the time. At least you don't have to worry about that.

I will be here whenever you need to scream or cry or even whine. I am new here too so I can tell you that it helps to have people who can relate to what we are going though.

Judy
 
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