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Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,684
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
My husband was diagnosed 1/2007 but had symptoms like foot drop, twitching, weakness, fatigue and slurred speech for about2 years prior to that. He kept it a secret from me--he knew it was serious and didn’t want me to worry. I didn't notice anything except the fatigue until about 6 months before his diagnosis. I just thought he was stressed out from work and getting older--. In Dec. of 2006, started noticing other symptoms and I told him I was worried about him, he freaked out and had a massive panic attack, I think from the stress of holding all the worry in. I thought he was having a stroke on the spot and called 911. A week in the hospital and nothing was decided except what it wasn't. His symptoms increased massively during this month and became very apparent. GP sent us to a neuro--I think he suspected ALS. 1st appointment, the neuro told us he had ALS based on the symptoms but wanted to do a EMG and Nerve test. A week later, we had that done and he confirmed it.

Husband refused to believe it, and started hunting for some other disease and some other cure. did the Lyme thing, naturopathic, mystic, aroma therapy, chelation therapy, antibiotics and anti-fungal drugs, piles and piles of herbs, vitamins and potions. You name it, we tried it but He just continued to decline of course.

He would not use a cane when he was first diagnosed, he insisted on using a walking stick even though his hands and arms were weakest and his walking was very hard. He would fall so easily, and if he got nervous or cold, he would freeze up which made everything harder. That was the time that was the hardest…He had forbidden me to tell anyone of the ALS diagnosis because he could not accept it, so I was alone and trying to hide things from our kids and family and emotionally support him as well. When I look back at our ALS journey—that is the darkest time. There was no laughter or happiness, only fear and tears and terrible memories.

After a particularly bad fall in the bathroom, he agreed to get a scooter because it was too dangerous to walk within 3 or 4 months. He found a nice small inexpensive one on line and his life because so much better. He used it in the house, since I had to go to work after he got sick (we own a business)and he was all alone all day. He could no longer work very soon after his diagnosis because he suffered from emotional liability and he was completely breaking down. We actually found that people in public are more accepting and accommodating of a scooter than a cane or walker. He was much safer with the scooter. He still drove, which was a mistake. Sometimes I still think he was hoping to have an accident and be killed.

He used the scooter for about a year, and continued to go downhill. His arms became weaker and weaker and he could barely drive the scooter. His swallowing was bad and he was choking. I began pureeing his food. He had terrible cramps and twitching. He would not let anyone but me care for him and his emotions were out of control. His personality changed. He insisted on using the toilet instead of a potty chair and it took 2 or three people to move him into the tiny water closet. He could not stand in the shower and would not let me modify the bathroom so he had sponge baths everyday. I know I sound weak, but he was always a strong personality and he had his own ideas about his life. I loved him and didn’t want to make him more unhappy than he was already was. About a year after his original diagnosis, I convinced him to give up on all the charlatans and “cures” and go back to an ALS clinic. He agreed to go to Mayo. In April of 2008, we got a confirmation of ALS from Mayo in Jacksonville. Even though he could still walk (barely) they moved forward with a PWC for him. He refused a peg and bipap at that time. Overall though, things began to get a little better for us. He still hoped that he did not have ALS (still thinks that to this day) but he began taking antidepressants to help with the emotional liability and he became very involved in working on the computer and making everything work for him. He began “living with ALS”, I was not doing as well however. The exhaustion of caring for him, our family and our business was more than I could take. I was very despondent and weepy and tired to the bone. I found this forum, which was so helpful, and I began taking anti-depressants. As I started feeling better emotionally, I became a better caregiver. I am ”living with ALS “ now also. I insisted on changes to our living situation (the bathroom!) got the shower remodeled and bought a potty chair. Also started getting caregivers in to help with his daily care. I found out about a test drug for emotional problems and had it compounded by a pharmacist for him. He became much more normal acting and easier to deal with. Interestingly, his progression began to slow down in 2010. He is still progressing, but is doing pretty good considering how quickly things were moving in 2007. He still refuses a bipap and peg and only weighs about 120 lbs (Pre ALS 200 lbs.) I had his breathing tested and his FVC is 22% and co2 is 38%, and o2 is 90. He says he is fine, so I say he is fine. He is still the boss of his own body. He is busy with the computer, learning new things and programs. We laugh and joke and don’t cry anymore.

Now, we have a daily caregiver, so he is only alone for a couple of hours a day until one of our kids gets home from school. He can do nothing for himself—he has no use of arms, no ability to walk, speech is difficult and eating is very hard. Sometimes he has coughing attacks and lots of mucus comes up. That is very scary when it happens—his blood pressure goes up, he stiffens up and it is so hard to comfort him. Afterwards, he is exhausted and worn out. I still see changes happening—more atrophy in his legs now, speech is harder to understand, more disturbed sleep and bathroom problems Ugh.

When will this be over? Who knows…the standard answer is 3-5 years yet here we are at 6.5. I fear the future of course, and my heart hurts when I think of it. In the mean time, life goes on and he is an inspiration to me. His positive attitude and zest for life gives me hope.

So this is our story, and I hope someone gets something good out of it.
 
Barbie, your story does help. I have always read your advice and considered you a very strong woman, wife, mother and caregiver. Living with ALS is not for the weak. I worry that I'm not doing enough for Jim and just retired to help him more as walking is getting harder for him and he will not consider a PWC for now. I have to let it be his decision when he makes his next move. Living with ALS is living with an hourglass and I'm constantly watching it. The sand is moving too fast. Thank you for sharing and always being there for us, too.
 
Barbie

Your story is a wonderful testament of love and devotion. You are strong and brave. It is hard being ill but I think it is hardest on the caregivers and family. I am praying for your continued strength and thank you for sharing this beautiful story. I thank you for all the help and compassion you show to everyone here also. Hugs.
 
Dear Barbie

I have joined the forum only recently and it was posts like yours, full of honesty, that encouraged me to join.*Thank you for sharing so openly. Having ALS disturbing our lives is freaking hard no doubt. But your story is an inspiration and a beautiful example of integrity.*Wishing you and your family continued courage and strength.
 
Hope you have another opportunity to get away for a couple of days.

I just don't understand why we PALS have to resist equipment and modifications that could so improve our quality of life and make life less worrisome and easier on our CALS.

Blessings to you and your family.
 
Barbie,

Reading what you just posted has left me weeping and speechless.
What a beautiful testimony of love, integrity, courage, faith.

Some of the facts you have posted could apply to anyone, PALS and CALS alike.
I, myself, as your husband was in complete denial when I was told I had ALS at JHU by the chief Neurologist. I sought second, third and even fourth opinions, hopping that I was going to hear other words, other diseases that could have mimicked ALS but that could be treatable but, opinions after opinions after opinions did nothing but confirm ALS.
I felt devastated because all the Neuros I went to seeking for different opinions only confirmed that I had the Bulbar-onset which in their own words was the most aggressive variant of ALS which tends to progress extremely quickly and they were predicting I would live between 12-18 months before my respiratory muscles finally collapsed. That was in Dec. 2011.

Like your husband, I even shunned communication with ex-colleagues from work so they didn't know I had been hit by this monster and dreadful disease.
I stopped going out, I stopped driving, I stopped watching TV or listening to the radio.
But then, I told myself this: "If my life expectancy has been predicted to be so short, and I won't have much time to do things I have always enjoyed doing, why waste the little time I have left on this planet just worrying about things I cannot change?" "Why not enjoy doing things I love doing until my time comes?" "I still can adapt (I told myself)".

If I can no longer walk safely, I will use a cane. If the cane no longer works for me to be safe while walking, I will use it with an AFO. If the combination of cane/AFO no longer works, I will use Rollator. If the Rollator no longer works, I will use a wheelchair. If my hands no longer have the strength to push the wheelchair, I will use a Power wheelchair, etc. If I can no longer be understood when I talk, I will use my iPad with Proloquo2Go and will make myself understood by people.
The thing is to ADAPT, ADAPT, ADAPT, and adapt. Never give up while my mind and my body still want to fight the good fight.

I think that is the important thing. Never surrender, never back away.
I could still drive if I wanted to but, for some peace of mind and safety, I don't do it but, my family take me wherever I want to go, whether it's to the movies, to the mall, to a theme park, to travel, to a casino, etc.
I still fix computers, play chess, read good books, etc.
I no longer think: "Hey, I am going to die soon from this disease" . What I do, however is enjoy each day I have left to the fullest because these are the things that will make my family (who are my lovely caregivers) and myself happy in the long run.


Barbie, again thanks so much for sharing your story and for being a courageous, lovely and tender person. You are an inspiration for many here. Keep it up.

NH
 
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Thanks so much for sharing your story. I read your posts all of the time and I know you have been on this forum for a long time. I usually go back to the bio pages to find out the story behind the person - but that only tells you so much. I value your input to my questions as I am just starting out on this awful journey with my 86 year old mother. I wish you strength and I want you to know that your posts are very helpful to me.
 
Thanks guys for your comments. I think my story is just another variation on everyone's story here--and it is nice to know you are not alone on this journey whether it is short or long.

Many people helped me on this forum when I was new, hugging me when I was sad, yelling at me when I was bad, sharing tips and ideas and just understanding. sadly most of them are gone now. I am glad that I can pay it forward.

Thanks to all of you for being here!
 
I second all of the above. You are a beacon of strength and wisdom for all of us new here to the forum, especially to the CALS. Thanks for all you do!
 
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