New Poster, Blindsided by ALS

[dawnm]

My 35 year old husband, Todd was diagnosed with ALS in August 2013. Like everyone else, our lives were turned upside down in the blink of an eye. We have 2 Beautiful daughters Emily (emmy) 18 , a Freshman at Middle Tennessee State University, and Lilly Grace 5, started Kindergarten this year. We are trying to hold it together and keep as Normal Life as we can for our family. Some days I fail I think. Todd has had to quit work. It has affected his right arm and hand, and starting to affect his right leg and he sleeps all the time. We are bound and determined to have Good Days and we do. Unfortunately, watching my energetic, full of life husband deteriorate is heart wrenching. Sorry, I just had to vent to people who understand. Thanks for listening!

 

[MaxEidswick]

Hi, Dawn -- I also was diagnosed in 8/13. Tell Todd I am happy to exchange emails or forum messages anytime. [email protected]. For me it is speech, swallowing/choking, left arm about gone, right getting weak, a bit shaky on my feet but still walking. .

Max

 

[bigmark1954]

Dawn.......very sad to hear about your husband. I am 59 and just diagnosed recently, it has changed my whole life as well. I wish I could add some words of encouragement, but to have this so early in life, must be completely devastating.
God bless you and him on your journey!

 

[Janie H]

So sorry Dawn, he is so young, I am lucky I guess, my voice is leaving me but no limb onset, I too have trouble swallowing, recently got a PEG tube, it helps with liquids, you are in my prayers. My son is 35 and I can't imagine him have this disease, I am 53, I also sleep a lot, I blame it on the meds. I was diagnosed in June and except for my breathing, swallowing and voice, I seemed to have leveled out with no other issues, hopefully your husband will be similar and not have much pain.

 

[ottawa girl]

Welcome Dawn,

I hate ALS - but hate it all the more when it affects young people. This forum will help you, and I hope your husband joins as well. You can strive to be normal - but Dawn, it's a new normal. You don't fail at a new normal - you do the best you can. Don't be so hard on yourself - ALS is hard enough.

Initially, I slept a lot too - I think it's sadness and fatigue due to the sheer weight of the diagnosis. My doctor prescribed anti-depressants some 8 months after diagnosis and it helped a lot. I sleep less. Live more.

 

[dawnm]

Thank you so much for all your encouraging words. I will encourage Todd to join. I think it would help to speak to you all even more so than me. I will keep you all in our prayers and hope to speak to you more. God Bless!

 

[affected]

Welcome Dawn. You have joined the club no one wants to join, but I'm glad you are here as it is the best place to be! It would be great if your husband joins too. I don't know if we often have both partners here at once.

You will need to be a member yourself too, as a carer this is a very hard journey too. I can't really imagine exactly what my husband is going through even if I am with him all the time. But it is the most heartbreaking thing to watch indeed. The other carers here are wonderful and I count them my closest friends in some ways.

Feel free to post something in the caregiver section too, about yourself.

My husband is only 55, and has bulbar onset, so is quite rapidly progressing. You will get great tips here from other carers on all sorts of stuff that comes up. I see one of my main tasks as carer is to try and stay a step ahead of progression. Not easy, and PALS feel threatened by it at times. But it saves a crisis - I always have all this equipment that I have to put away as he won't use it. Then suddenly one day something is just too hard for him and we have the equipment there - crisis averted

Blindsided is a good description! But somehow it is oddly true that we adjust and find ways to still have a lot of pleasure out of life together.

 

[Santa joe]

Dawn - watching this disease and knowing there is nothing I nor anyone can do is the hardest. Make the best out of today because you never know what tomorrow will bring. I'm glad you joined us on this forum. You will be amazed at the wonderful PALS and CALS that will be here for you on this journey.

Debbie

 

[FSHolbrook]

Hi Dawn, I know exactly what you are going through and am so sorry that you had to find this group. I am guessing that everyone here hates ALS but, you are on the right path, stay positive and try to maintain life as before, It is not easy I was diagnosed last Sept. 5 ( a day I will never forget.). Know that you are on my prayer list and I hope that the disease progresses slowly. My symptoms are almost like your husbands.

Rick

 

[zoohouse]

It has affected his right arm and hand, and starting to affect his right leg and he sleeps all the time. We are bound and determined to have Good Days and we do. Unfortunately, watching my energetic, full of life husband deteriorate is heart wrenching. Sorry, I just had to vent to people who understand. Thanks for listening![/QUOTE]

Welcome, but sorry we couldn't be chatting about something pleasant. My husband and I have 6 kids between us, the youngest two are 21 & 15, and I know it is very hard for the 15 year old. But we have been blessed with a good sense of humour and an amazing support group. My husband is now a partial quadriplegic, but thankfully has maintained his speech and swallowing. We were only married in 2011 and he immigrated to Canada just over 1 year ago from Texas. He absolutely loves the mountains and the wildlife and has reacquainted me with the beauty that surrounds us. He loves watching the kids sledding or attempting to sled across the street, or play basketball in the summer. The kids all know him, and look to see if he is watching, giving him a big wave. The kids next door come over once a week to read to him for practise, and then listen to him read a Louis L'Amour novel. He has such a great western drawl, and has always had a passion for reading, and being with kids.
That is not to say that he wasn't athletic, because he moved like a cat, and played too many sports to mention. But his faith was always his priority, and it has held him up through this difficult time.
Now I noticed that you mentioned that he is sleeping all the time, and I think it is something that may be helped. Two reasons this may be happening is, depression, and sleep apnea, which is extremely common with this disease. A person does not have to snore to have sleep apnea as it could be caused by the central nervous system rather than an obstruction of their airway. When we don't get enough oxygen while we sleep because of sleep apnea a person will wake up tired, and or with a headache. It would be worth looking into, and your doctor can set you up with a sleep lab.
The more that you read on this forum the more that you will see that both PALS & CALS are dealing with situational depression and have found medication helps. Others deal with it through meditation, and other means, but it is something that can be helped.
Feel free to vent, or ask questions, or just post something good or bad that you need to talk about.

Paulette