Diagnosis Confirm my husband has als.

@suspenseful (40316)
Canada
October 20, 2009 3:25pm CST
By some quirk, we got a call on Friday for my husband to get the muscular nerve stimulation test done on Monday morning. I told them that yes we would be there and I immediately called Handitransit to pick us up and to pick us up at noon at the hospital. On Monday morning, we got our ride and went to see the lab. where they performed several tests complete and at the end, the doctor there told us that my husband definitely has als or Lou Gehrig's disease. He was, the doctor that is, upset that they had not found it out sooner because my husband was showing the symptoms, but I guess all they saw was stroke and nothing else would cross their minds. Anyway we were glad that what we suspected was true. The doctor says he can give us medicine to keep my husband from going into the dumps, but he tolds no progress for a cure. Our friends are there to help us. My husband accepts the diagnosis and wishes that his sister had the same help when she got als, but she only had her sons to depend on. So to ask the question, for those who suspected their relatives had als or any fatal condition, did that person suspect that is what it was or did it come out as a bolt from the blue, to quote a phrase?
7 people like this
16 responses
@Mickie30 (2633)
20 Oct 09
This must be a terrible situation for you, you are very brave to come on here and share your story. I cannot really say anything to help although I will pray for you. I cannot imagine what you are going through at the moment.
3 people like this
@cher913 (25889)
• Canada
20 Oct 09
sorry to hear that sus, hubby has an aunt who has als too. it seems that it took forever to diagnose her too. it could have been because they live in a smaller town but the doctor had no idea what he was dealing with. when i heard her diagnosis, i wasnt surprised either because what i had heard about her symptoms sort of fit. take care of you!
3 people like this
@Lakota12 (42681)
• United States
21 Oct 09
As far as I know I habvent seen or know anyone with this als. But when they told us hubby had cancer with only 3 months to a year to live we were very shocked and he lived 9 months but even in that time wasnt really prepared for him to die. You are NEVER really ready as you keep fighting to find ways to help them get better!
2 people like this
@suspenseful (40316)
• Canada
21 Oct 09
We have had a lot of help from our church and my husband has started to come to church. I had prayed for him for years and now it finally happened. He did not want to go because he had been burnt by a false church. We did suspect it was als because his oldest sister had it, but she was not lucky to have it diagnosed. They did the same thing with us, said it was a stroke, but we suspected it was not so because my husband and my sister=in-law are not fat people. So she did not get the help she needed nor the support. We are now waiting for a letter from the als people here in Winnipeg and will probably get my husband's medical records transferred over there. That will give us peace of mind.
@Lakota12 (42681)
• United States
21 Oct 09
I am sure that will ease your minds
1 person likes this
@suspenseful (40316)
• Canada
9 Feb 10
It sure does. At least, we know what can be done and what cannot be done. We know that my husband has a limited time to live and must make the most of it.
@lastain (79)
• India
29 Oct 09
So sorry to hear that about your husband. My sincere wishes for him and your family. To say, I myself is a patient of ALS. It was diagnosed two years back when I was only 21 years. Now I'm 23. Because of this I had to leave my job. Atleast for now, it's confined to my right limbs specially the right hand. You can say I'm lucky as the progress of the disease is rather slow as compared to the general case. When I was diagnosed of them, I was completely unaware of what it was. Then i search the not and gather some more information. I started putting up question on the doctor. The bad thing is that there is no cure till date. I have been using COQ10, an enzyme that is on trial release. It's expensive and the result was not good, so I had left it. Now, I'm doing physiotherapy and yoga and it is helping me a lot, strenghtening my muscles and doing co-ordination exercises, breathing exercises. I would suggest if you can arrange this for your husband. Let's hope for the best. Whatever happens we have to live on. I'm the only son of my parents and so, there is also a mental burden. Still we all have to face it. Let's make it simple by not thinking much about it. my sincere wishes are with you and your family.
@dragon54u (31663)
• United States
20 Oct 09
I'm so sorry about the ALS! I'm glad you finally found out what it was, but why didn't they test him sooner rather than just assume a stroke? At least you know what it is. You can probably get services and support from the ALS foundation http://www.alsa.org/ I'm sure they'll be able to help make both your lives easier and suggest ways to improve his life's quality. There's nothing worse than uncertainty so at least that is behind you. You and your husband will be in my prayers, as always.
2 people like this
@suspenseful (40316)
• Canada
21 Oct 09
The doctor at the Neo Center Unit at the hospital was upset too. He is one of the two main doctors in charge of als here in Winnipeg, and he said that the tests should have been done sooner, but I guess the other doctor just had stroke on his brain. We have a center here in Winnipeg called Deer Lodge where they deal with just als patients and since we now got a van (to be here on Monday or Tuesday) we can get our friend to drive us there as my husband will be an outpatient. I do not know how long he will live, and I want him to die at home. There is a pallative care unit where he can go and I can still keep the house that is all paid for. thank goodness for that.
@pastorkayte (2255)
• United States
25 Nov 09
I have never met anyone with this condition, but I have worked around some and a lot of families mistaked the als for some other elderly persons illness. A lot of times it would be on going before they were diagnosed and usually only after they had hurt themselves or put the household in danger.
1 person likes this
@suspenseful (40316)
• Canada
25 Nov 09
We were told it was a stroke, but then when we went to the Big Gym for physical therapy and they found he was not improving, we knew it was something else. Then my husband did not look at all like those people who had strokes. he was not obese or anything like that. He went from a cane to a walker to a wheelchair and now he is in a power wheelchair. He has ordered a head rest and a month from now, he will be getting a recliner power wheelchair so that shows how fast the disease is progressing. We had our house renovated and have a ramp. I think that doctors figure stroke, because maybe that is something that you can blame the patient for, but with als there is no blame it just happens.
@Polly1 (12648)
• United States
9 Nov 09
I am so very sorry to hear this. I wish you both all the best. I know there isn't a cure but I hope there is treatment and medicine to help him. Take care.
1 person likes this
@suspenseful (40316)
• Canada
25 Nov 09
We are waiting for the approval of the medicine that will help him. But the doctor has not sent in it yet and it has been over a month.
@KrauseHome (35690)
• United States
9 Nov 09
Well, I have never had anyone in my family experience any life threatening illness like this, but I did have a good friend that I did date for a short while who had Hutchinsons disease and it was quite sad to watch as he went downhill and lost a lot of his balance, etc. One day I only hope that a cure or better medications for these type of things can be found for sure. My thoughts and Prayers are with you my friend.
1 person likes this
• United States
24 Oct 09
Hey, that is not the best news, I have been doing a ton of research about things in the medical field such as vaccines with this swine flu and I am highly concerned about diseases, cancer, autism, and so forth. My thoughts are with you my friend.
@suzzy3 (8357)
22 Oct 09
What bad luck I am so sorry to hear your bad news.I think with so many symtoms it is plain to most people something deeper is wrong,you always hope that it can be cured,it must be one hell of a shock to find there is no cure.Make sure you get everything you are entitled.Make the most of the time you have and enjoy each other.I don't really know what else to say ,god bless you both.
1 person likes this
@suspenseful (40316)
• Canada
5 Nov 09
It did not seem like a simple stroke to me and my husband does not look like the people who have strokes He is not fat or anything like that. AT least now he is going to church. I wish he had wanted to go to church sooner. I mean think of the years that he missed.
@lynnemg (4539)
• United States
21 Oct 09
I have not known anyone who has had ALS. It is a shame that the doctors did not look into the possibility before. You would have thought that they would have, especially with a family history of it. I guess that rather than sit and wonder why it wasn't found sooner, the better option is to be glad that you know now and move forward from here. I hope that now that the doctors know, they do as much as they possibly can to help. At least you both have a little piece of mind just knowing.
1 person likes this
@suspenseful (40316)
• Canada
5 Nov 09
Our family doctor has absolutely no people skills. He even said once I had br*st cancer and for someone who tends to eat sweets when depressed, and had a father who had diabetes, that was not very good. I am thinking of perhaps going to another clinic and find another doctor. I do not like switching doctors, but I think that would be the best way. My husband's legs are now starting to go, but we do have an appointment the next couple of weeks at Deer Lodge where they only take care of als patients and now that we have the van, he will be going there as an out patient.
• Australia
21 Oct 09
wat is als?
1 person likes this
@suspenseful (40316)
• Canada
27 Oct 09
Als is also known as Lou Gehrig's disease. The muscles start to atrophy, get smaller. This website explains it better. http://www.als.ca/manual-whatisals.shtml It destroys the motor neurons that make the brain control the body. It usually starts with arms or legs getting weaker. It does not effect the intelligent part of the brain, so the victim is coherent to the end.
@iwrite (5041)
• Singapore
21 Oct 09
So sorry to hear that, I guess at this moment, you have to be the pillar of the family and it would be stressful on you. However I think you do have many nice friends around here. I hope my moral support would make you a little stronger, if not just a little more relief that someone half way across the world would give you emotional support.
1 person likes this
@suspenseful (40316)
• Canada
23 Oct 09
Thank you. I do not get out much now unless we have someone to come in and look after my husband. Right now three of my friends are on holidays out of the country. We are waiting for the back rest to come for my husband's chair and also the van, but I do have some bills to pay and they will be overdue by then. Well anyway today, my older son and daughter-in-law are coming with Katie and her new baby brother, Landon. We have not told them of the diagnosis yet. We told them it is probaby als. My other son is on his honeymoon so will tell then they are back.
@riyasam (16571)
• India
21 Oct 09
i am not sure what is Lou Gehrigs disease but somehow it seems to be encouraging than a stroke.i also have health problems,being a doctor i do know what could be the cause but i often tend to go on a denial until someone else or some other tests confirm the fact.
1 person likes this
@suspenseful (40316)
• Canada
21 Oct 09
In Als or Lou Gehrig's disease, the muscles gradually waste away. It is fatal and the average life span is 3 years, but I do not know if that 3 years is from the first symptoms or when one finally notices the muscles getting smaller. It starts usually in one's arms - a weakness - and the legs so it mimics many other conditions at first. We suspected that is what it was, but we had to have the confirmation so my husband can get treatment. The treatment will be making sure he is comfortable and getting medication so he does not go into depression. It is better then a stroke because there is no blame attached to als.
@Thoroughrob (11750)
• United States
21 Oct 09
I am so glad that you finally have gotten answers, but sorry that it wasn't good news. I hope the medicine will help. I have never had anything like that happen, but know how hard it is caring for family. Have you gotten your van?
1 person likes this
@suspenseful (40316)
• Canada
22 Oct 09
Our sons will say that they will help us and we have our friends. We did get the van and our friends have taken the plane out to Alberta to pick it up. It is about ten years old and the former owner was in a wheelchair and he drove it. I do not drive as I am always afraid I might run people over so our friends are going to drive us places. What makes me upset is that I do not like to go grocery shopping with my husband and before I went with my other friend and I did not have to worry about him complaining "that this cost too much or you don't need that." But now I have to put up with that again. The Als confirmation seems nothing considering that I want to be healthy enough to care for him and something good food costs money.
• Canada
21 Oct 09
Wow! That's kinda scary. I'm glad he's accepting of it, though. You and he are both in my prayers.
1 person likes this
@suspenseful (40316)
• Canada
23 Oct 09
Thank you. We will be getting more help. We are waiting for a letter from Deer Lodge who will tell us what we need to make my husband's last years, or months more comfortable. I am gradually taking over the grocery shopping with my own pension for when he is gone.