Unwilling "club member"

[Phil's wife]

Well, after reading this forum as a visitor, I joined today. My husband has been having bulbar symptoms for almost 2 years now, until about a month ago we had no idea it was ALS. Doctors kept saying possible side effect from other medication he was taking. We saw a second neurologist in February who felt like it was ALS, after testing, still probable ALS. Now we await to see Bertorini in 2 days. In the last month, in possibly a combination of taking notice and progression, we have seen more symptoms that fall right into line with ALS.

So unfortunate...so many plans and dreams of future dashed away. I know everyone can write a book on that for your own lives.

Is there a current thread that anyone remembers on here or can anyone offer suggestions on what we need to do immediately? I read on Miss's recent posting the helpful suggestions of wheelchairs, ramps, shower preps, insurance, important papers, etc. What about things to find out from the doctor? Any suggestions there?

Thanks for taking the time to post and answer questions. I learn something everytime I read a thread.

 

[indigosd]

Believe me when I say that I am soul sorry that you are on this journey! I have to plant some plants so can not be on the computer but I will return later. Hang in there [even if it one raggedy fingernail!] and Welcome to our forum. hugs
FYI you can go to the search box and type in any word and you will find tons of information!

 

[handinhand]

Hi Phil's wife, I am so sorry you had to find this forum but folks on this sight are kind and loving souls.. You are in the right place.... I have had Bulbar for about 20 months now. The best information I have been given is to be one step ahead of what ever seems to be showing its ugly face. I started not speaking clear, then the swallowing so that is what the Dr.s helped me with first. We all go down this path differently. But as you see things happening ask on the forum about it and you will get honest answers. I know you will recieve lots of help with your questions.. I have read through the threads on this sight and found many useful ideas . Be very careful of scams at first. We all have looked at them hoping for some kind of cure... Like my Nero said to me when I handed him 5 pages full of questions about cures? He said,[I will be the first to tell you if there is anything out there that will help you..] . Big Hugs to you and your husband, Linda

 

[lynster]

Hi Phil's wife,

Welcome to the forum, even though we all hate the reason we are here. My recommendation would be to find a multi-disciplinary clinic to attend. You can get so much information from there. Beyond that - check out all the stickies at the top of each header here on the site. There are many, many ideas and many, many answers. Info on applying for SS disability, equipment, problems. All sorts of things! Many helpful people here, too.

Don't find what you need to know, just ask!

We're all here together.
Keep the faith.

 

[ghii]

Phil's wife, your words echo what I find myself thinking, an unwilling "club member".

My husband also has bulbar symptoms two years ago. I just knew something was very wrong, he was going downhill so fast. He went from being an always young older man to being an old man practically overnight. He started walking funny, his muscle wasting away. When he was diagnosed with myeloma, I put it all to that and then he started having swallowing problem, voice changing to high pitch, then slurring his words like he has a thick tongue. We saw a neurologist who told him he has neuropathy in his feet and hands and that he is aspirating food. When his voice went from high to low, I brought him to our primary doctor who referred us to another neurologist - who diagnosed it. His EMG is mild but abnormal. The doctor is ordering more tests, we will see him in a month's time and he will see then about putting him on rilutek. I never found it a comfort having a doctor - on a journey like this. It is like I have someone to help me see to things.

My husband has atrophy at the temple accounting for some Alzheimer. I asked the doctor what to tell him. He started and ended up telling him he will get more tests. I believe he feels also, it is best to go step by step with my husband. He talked about feeding tube, my husband was adamant about that, no tube. He wore a catheter for two weeks and learn to hate tubes. That is where we are right now.

The night before the EMG test, I had nervous stomach, experiencing sinking pit in my gut. It prepared me for the following day. When it was confirmed, I went into a "dead" mode. It was like waiting for the ax to fall and when it fell, one acknowledges it, mind in a numb state.

I find it is easier being brave after a hard cry alone. I find this journey terrifying until I come here and then I calm down. I still find it terrifying but at least now, I do not feel I am alone in this.


gertrude

 

[Miss]

gertrude,

I couldn't agree more. I come to this site to help calm down. Knowing that I'm not alone, and that others are enduring in the face of the same horror gives me strength. This is our first week with the diagnosed. It's hard to digest, so I'm just keeping busy filling out forms - SSDI, STD, VA, LTC, etc. There are so many, I imagine that my mind will be occupied until the end of next week!

Phil's wife,

You have been in my thoughts all day today. I am praying that Bertorini believes it is something - anything else.

 

[Twinsmom]

Dear Phil's wife,

Sorry you've had to come looking for us, but glad you've found us. This forum is filled with the bravest, most compassionate souls in the world. I am daily in awe of the grace they all demonstrate while LIVING with this disease.

As far as advice, probably the hardest, but ultimately critical thing to do is to have the tough conversations regarding the kinds of medical support your husband wants as the disease progresses. EVERY journey is different, yet ultimately decisions about feeding tubes, Vent etc...need to be thought through and figured out. Your job is and will be to love him through this journey and to be his warrior and advocate to make sure his wishes are honored and he is comfortable as you go through the different changes.

Peace to you and prayers for courage and grace,
Melody

 

[Phil's wife]

Thanks to everyone for the comments and advice. Unfortunately ALS was diagnosed yesterday. Currently my husband is still working, but he is ready to be home as soon as he can. We want to refinance the house and feel like we need to do that before he is on disability.

Peace and strength for all of us.

 

[Miss]

I am so very sorry. I so hoped you would hear something else. We are still waiting to see Dr. Bertorini again. We do have a confirmed diagnosis from Semmes Murphey, though. Bertorini told us that it was ALS at our January and February appointments. Terry just didn't want to hear it. Because I knew that Bertorini was right, I had a lot of the leg work done before last week (Terry went on disability, then got the diagnosis). Please feel free to contact me anytime. Another Memphis CALS gave me some invaluable direction when I started this process.

 

[Ladyinn]

eireannach,

Who are you angry with?

Ladyinn

 

[ghii]

Miss, I first learned of it in February. The strangest thing was the way I totally dismissed it when the neurologist told me. Lou gehrig, no impossible, he is wrong and I completely dismissed it. It took seeing Als writing on a breathing test for me to google Als and then I knew my husband has it, he has all the symptoms. When the EMG confirmed it, I had gone through the worst and simple went into a blank state. I still blank out, thinking without thinking, and looking at trees. Wherever I go, I look at trees. It just seems everything is so unreal, but the trees are real. Just from last Friday I noticed a difference in my husband, he gets so so tired. He rested and often wail silently to help him endure the pain. I told him it is all right to moan, groan, wail or cry because it does help. I know this is a respite, we are still buying time. His so far is not rapid progression. I pray it will stay gradual.

gertrude

 

[indigosd]

Dear forum family, do NOT allow this man to distress you. I have requested that his hurtful, harmful and inflammatory posts be permanently removed and that he be permanently banned from the forum. He is obviously very distressed with a sad soul. If you look at the date and time of his replies it would appear that he is possibly inebriated as it is late and the weekend. [at least I PRAY that there is something to blame for this behavior!] Maybe his wife "Trish" died recently or maybe this is the death anniversary..? His words only have power if you allow them to impact you. Al, when you begin deleting the posts please delete the ones that are in reply to his flaming-none of us need a reminder of this "Christian" man's pain. Thank you. The Monkey's are flying to Oklahoma coat his soul with the balm of peace and compassion.
O'Raithbheartaigh "Let the day's own trouble be sufficient for the day." His signature line says it all!
__________________
"Let the day's own trouble be sufficient for the day."

 

[Miss]

Gertrude - I look at the azaleas. I feel exactly like you do. Blank. I accepted it months before the diagnosis. My husband also moans and wails sometimes. I know it helps him, too. I am sorry you don't have someone close by that you can make contact with and get support from, but you do always have us.

 

[brooksea]

Dang Mr. Rafferty! Your writing has surely gone to the dogs! What happened to your sweet poetry? I'm sorry about your wife, but if you had any cajones you would either stay away from anything remotely having to do with ALS or you would offer your support and guidance. I'm sorry any of our forum members, especially the new ones, had to read your nonsense!

Y'all that are new, please don't let this grieving man offend you in any way. His wife died in June 09. May she rest in peace...

I hate that any of us have to be here on this forum, but I'm glad it's here so that we may offer each other friendship and help when possible.

 

[ghii]

Miss, my husband never like to be committed to doing things with friends, he feels fettered, as a result we do not have close friends. When we moved back here, at least we have two close friends of his dating decades back.

I have to look up azaleas. They are beautiful. I don't know why I like leaves more than flowers. I plant mostly leaves like ficus.

This morning we went to flea market. My husband likes to walk around a bit. I soon noticed he could barely walk and was walking slowly with difficulty and pain. I looked at him horrified. Only last week he was able to walk. How can it move so fast. I watched him, heart aching, I understood the term, dying a bit inside as I watched him. I stayed in frozen state, heart in my mouth as I watched him closely. How can it move so fast, I kept asking, my mind in a state of shock. We left soon after. He is still driving, I have a feeling he will soon be willing to give that up. Right now, he only feels very very tired and refuses to give up driving. As he drives, I watch out closely for him. I sat beside him, crying silently and he never noticed a thing. He was too occupied with feeling so so tired. It is merciful in a way that I am able to cry silently without him noticing it. Once back, I cried it out. I found that a good way of staying strong than keeping it all in.

I phoned an old friend of his in Hawaii. I thought I better tell her before he starts to lose his voice more. She is like a sage. She took the news, a bit hurt I took so long to tell her and told me she hope it will be short. Her brother-in-law died a year ago from it and it was much too long. I told her I pray it will be short also. She told me she is glad to know that because not everyone feels the same way. He has lived a good long life and she hopes it will be short for him. She laughed as she talked on, giving me advices about seeking hospice care when it comes to it, and getting our affairs in order.

When I put the phone down, I thought, recently, I forgot to laugh. The last few days I forgot to laugh. I have to remember to laugh however hard things are because laughter is healing. She talked to my husband who felt very good also after talking to her.

I tend to emphathized too much. It helps in a way because I am able to sense how much my husband could take and stand. A few weeks ago, a woman giving us direction to the tax office told me, "It is a short walk." I looked at the building and thought, it is not for him, he would not be able to make it. I suggested we head back to the car and he was only too happy to do so.

That friend told me to call her any time. I thought, when I forget to laugh, I will call her again.


gertrude