Husband newly diagnosed with ALS

[barbis1020]

My husband was diagnosed 3 months ago and his symptoms began with slurred speech a year ago and has progressed to limb weakness and choking on his saliva etc. but not food yet. His Neurologist diagnosed him even before he did the nerve conduction testing. However we are going to the U. of Michigan next week for another evaluation and I'm hoping some answers to the many questions I have about this disease. We told everyone we know, family and friends right away. It is so helpful to have their love and support. I am hoping to learn a lot from this site from ALS patients as well as care givers. Is there a forum just for caregivers? I want to know everything even though I have researched and read a lot it is more meaningful coming from someone who is living with ALS or caring for someone who has ALS. I would like to hear from anyone who wants to write to me about this disease.

 

[EJTUNow]

I am on the ALSTUN (ALS treat us now) steering committee, we invite you
to ask us for more information.
tell us if you’d like to join one of our teleconference calls.
help us help you.
About Us
e-mail address is
[email protected]
or
[email protected]
best to you,
Ed

 

[vickim]

There is a section here for the caregivers(CALS). There are other sections here on helpful tips and devices. The people here are great and very smart. You can ask any questions you might have and someone here will have an answer.

You can come on here for more than just questions, we will listen to whatever you have to say. We will laugh and cry with you. Whatever you need. I am sorry to say welcome to the club but very happy you found us. We are all in this together.

 

[Barbie]

Hi Barb--This is a very helpful forum and I get so much from cals and pals alike. you are right--it is so good to talk with people who truly understand what you are going thru.


Welcome!

 

[poppies]

Hi, I am also new to the forum and am in a similar situation to yours, my husband was diagnosed in 02/2013 after a year of symptoms involving speech. I have found reading the posts on the cals and pals sites so helpful.

 

[mich5]

Welcome! I see you're from Michigan. In Michigan, we have 2 ALS organizations who offer help. ALS of Michigan in Farmington hills and ALS association, Michigan chapter, in Troy. I recommend you contact them and maybe meet with them when you're down in lower Michigan next week. They both have loan closets (and loan equipment to us at no charge) and ALS of Michigan has a speech pathologist on staff who can speak with you about speech and swallowing issues and give you tips and advice. I know that's a lot of information to obtain in one week but I know how difficult it is to get back and forth from up north to 'the city'. . I know several pALS who go to u of m and they really like that clinic.

 

[barbis1020]

Welcome! I see you're from Michigan. In Michigan, we have 2 ALS organizations who offer help. ALS of Michigan in Farmington hills and ALS association, Michigan chapter, in Troy. I recommend you contact them and maybe meet with them when you're down in lower Michigan next week. They both have loan closets (and loan equipment to us at no charge) and ALS of Michigan has a speech pathologist on staff who can speak with you about speech and swallowing issues and give you tips and advice. I know that's a lot of information to obtain in one week but I know how difficult it is to get back and forth from up north to 'the city'. . I know several pALS who go to u of m and they really like that clinic.

mich5...my husband is in denial right now so I doubt we will be visiting the places you mentioned but I do appreciate your telling me about them for the future. We are 5 hrs from there so I doubt we will be making the trip again. thanks for your post.

 

[poppies]

Hello again. You are not alone. I may be far away, but we are in the same situation. My husband is also in denial. He says he is handling things, but refuses to talk about anything, from whether we have adequate medical insurance to telling our children and his parents. It is such a difficult situation to be in. On one hand wanting to do things at his pace, when he is ready, to wanting to know where we stand. I am concerned that our family will be resentful and more hurt by not being told sooner rather than later, but am waiting for him to feel ready. Have you told anyone? Is there anyone in your life that you can talk to and share with to lighten your load? I have been in touch with the local ALS organisation telephonically and they have been very supportive. It helps so much. Please be in touch any time you need to.

 

[Nighthawk]

mich5...my husband is in denial right now so I doubt we will be visiting the places you mentioned but I do appreciate your telling me about them for the future. We are 5 hrs from there so I doubt we will be making the trip again. thanks for your post.

I know it's very hard and difficult to accept this upon oneself right off the bat.
I was on denial at first. It was very difficult for me at the very beginning to cope with such a "monster" disease but, I finally had to come to terms with it if I really wanted to live. I chose LIFE.
And, I've been adapting as a keep losing body functions but all this hasn't stopped me from enjoying my life.
I still go to the theaters and watch a good movie, still go to the mall, still travel (last summer we went to Vegas and, I gambled, I lost though...LOL) , etc.

There is still ways to enjoy life but acceptance is the very important first step.
Just don't rush him, give him some time and, if you and him need help, there are wonderful people here, PALS and CALS alike that do understand better how to cope with this situation and are willing to help.

Kind regards,

NH

 

[frankb]

I strongly support Mich5's comments. Please telephone the Michigan ALS Chapter to learn what services are available to you. Although the nearest chapter is 4 hours away, there might be support groups closer to you. There are many, many services to which you will need access (Social Security, Medical, VA if your hubby is a vet, etc). It is well worth a telephone call. Also, this forum was a Godsend for me following my diagnosis since I knew little, or nothing, about the disease. No question is too small for our family, and there is a data bank of questions asked previously which perhaps can address some of your questions. Although hubby is in denial, it gives you an oportunity to learn about our unfortunate disease in order to better prepare for the future God Bless.

 

[barbis1020]

Hi Poppie....I told my husband that I was going to tell the children after he received his diagnosis and was he going to share this with his friends. He said not yet...he hadn't decided what to say. When the kids wrote back to me (they are scattered all over the US) or called I would tell them they had asked about him and a couple of them wanted to talk to him and hi talked and it was fine. Eventually he told his sister and some of his male friends and I wrote to everyone else so now EVERYONE knows and I may post it on Face Book later on. I hope you can find a way, or he can, to share this because you will only be rewarded in a good way with their responses, I hope anyway. We were. He still says he doesn't have it but I know he knows because once in a while he wil ask me about what to do about this or that. My husband, I think, has Fronto-Temporal Dementia along with the ALS but the Neurologist here wouldn't get in to this yet. That is why we are going to U of Michigan for further evaluation this week. Otherwise we just take one day at a time and live our normal daily life together.

 

[mariasb]

Hi,
I saw your post and decided to register. My husband was diagnosed 6 months ago and we too live in Michigan and have care from U of M ALS clinic. His symptoms started in his hands about a year ago and have drastically become worse. His hands are very withered. His speech is now slowed a little too. He has a really bad limp but so far the doctors have said that it is not related to ALS. We have an appt. tomorrow at U of M and I am going to ask again, but I really don't notice any muscle loss in his legs. We too are taking this a day at a time. I have vowed to not cry in front of my husband and to enjoy as much as we can for as long as we can.

 

[barbis1020]

Hi Mariasb,
My husband started with the slurred speech, then arm and leg weakness. He is still getting around on his own so far. He chokes now and then on his saliva and when he takes his pills but not on food yet. He lost 25 pounds in six months, he has emotional incontinence whereas he cries or laughs at the drop of a hot over nostalgic music or just looking at the dog looking at him he will burst out laughing. He is taking Nuedexta for this but it hasn't helped too much yet. He is also suffering from some form of dementia that they haven't labeled yet. Hopefully we will get some more answers at U of M on Thursday. I know this disease can present itself in different ways and it seems he has just about all of the symptoms one could have. He is in denial when it comes to talking about his symptoms but I know he knows he has this disease. With his memory loss though, maybe he doesn't remember too much from day to day. He is still able to drive. I cried one evening in front of my husband and he began to laugh and told me to take one of his pills! He can't cry when he needs to now he just laughs instead and this part is annoying to him. He laughter is what keeps us going so I hope it never stops! His whole personality has changed and our adult grandchildren like "this Grandpa" better. He was never a funny man before. Keep in touch please, I love sharing our story and it helps to read others also. thanks. God Bless you both!