Weakness of Tongue

[CindyM]

Hi Joel. I can understand your search for answers, especially if some answers lead to clues that give us hope or even make things better. I just hope, for your wife's sake, one of you also does some research on how to cope with the reality of your rapidly changing life situation. She will want and need a lot of support as her physical condition changes. Has she registered with your local ALS society yet? Perhaps when she is ready she can join us once and awhile also.

I am finding my entire family needs support right now! And some, like you, are uncovering every stone to find a way to slow things down.

Cindy.

 

[hboyajian]

One of the most traumatic parts of this illness is the not knowing. Not knowing what the cause of the illness is. Not knowing how fast the deterioration will go. Not knowing what to try to slow the illness down if possible. Not knowing if you will be able to eat or breathe tomorrow. For my family, not knowing what the real effects of surgery wil be. Some doctors and other health professionals were compassionate and able to answer questions and explain options. Some did not communicate as well, made downright odd or unkind statements, or simply didn't take the time. I think even these people were not trying to be cruel, but simply were overwhelmed/busy, misinterpreted the question, or had seen too many people in and out of their office or hospital room to care about any individual much. Some examples:

'"Nobody would agree to operate on you in your condition" when Dad asked what was the significance of his aortic stenosis. He just wanted to know if he was in imminent danger of a heart attack which might take him out sooner than the ALS.

"Younger people ask why didn't this happen to me at 84." when my dad asked why the had gotten this illness. He wanted to know what caused it, not being self pitying and asking 'why me?'

"We treat our pets better than we do human beings" when my dad had chosen not to be sedated on the ventilator so that he could be with us in mind as well as body for his last day. Yes, he was in some pain, but he wanted to be alert at that point.

Regarding mercury in dental fillings...I have a dentist who is willng to take them out and replace them with composite so long as I pay the difference between what my insurance pays and the cost of the new filling material. My fillings were old, and the dentist said it was reasonable that thay be updated so the insurance did pay for the base price of the procedure. It wasn't the dentist who made it hard, it was the insurance company. I chose to do this because I was concerned about potential mercury involvement in very slow healing from a back injury. I have no idea if there was any connection for sure, but I didn't want to lay awake nights worrying about it. The cost was so much less than all my other medical bills at the time. If you are concerned about it, get them out if for nothing else than peace of mind.

 

[ahpeditor]

In posting here these last few days, I realize that I'm taking my anger out on the wrong people. In fact, I'm sure that I've been extremely insensitive. I want to apologize and say thank you to Al, hboyajian, CindyM, Hope and Liz for your comments, care and concern. I don't know if Lisa is interested at this point in joining a forum, but I suspect she will be at some point.

-Joel

 

[liz]

Joel -

I'm really glad to see your last post - was afraid you might take a pass on this wonderful support. No need to apologize. We definitely understand the stress you're under. We welcome you and also Lisa if she chooses. My husband hasn't joined but there's days he probably feels like a member because when he raises issues I share all that I've learned here.

Looking forward to hearing more from you.

Liz

 

[Al]

Hi Joel. I was going to mention to try the search feature and check on toxins and amalgam fillings and mercury. There is quite a lot there to read. Some good some bad meaning there are differing opinions. We are here primarily as a support forum for people with ALS and their families and friends. Occasional rants are welcome as we know this is part of the process. We are all going to do it one day or another. As long as we are not hurtful or abusive it is understood. No need to apologise. We do understand.
AL.

 

[CindyM]

Good morning to you Joel, and to Lisa as well. It is perfectly OK to feel anger. It is one of the first stages we all experience when dealing with terrible news. So welcome aboard and glad you joined us! And do keep us informed if you uncover any interesting facts when you're looking into causes for this terrible disease. I wish the both of you an enjoyable weekend. regards, Cindy

 

[CindyM]

Liz- My hubby hasn't joined yet, he's not a big computer-user so he may never join. But I am sure he knows a lot from this forum. I tell him what I am learning and share the funny stories, like when MT fell and his wife asked what he was doing on the floor and he said, 'mopping the floor' and she replied 'Oh' and walked out of the room.

Sometimes when Lee makes a wise-crack over my condition I say, "Don't think THAT isn't going to make it online!" :-D

It is too bad we are so scattered geographically. It would be great to all hang out together on a warm beach someplace!

 

[JACKIEMAX]

hi - i'm new here, but have questions

hi,

i'm very new here. only joined very recently. my husband was diagnosed just a couple of months ago with als, but his symptoms began a little over a year ago. his symptoms to date are mostly weakness in his limbs, but his voice is very raspy. he has no problem swallowing at this point, but has to have oxygen to sleep at night. my questions are about the progression of this monster disease.... no one has the same ones at the same time, so living with als is like waiting for the other shoe to drop.

we don't know what to expect next. he can still walk short distances, although he walks very awkwardly, and has to sit down to shower, shave, and dress.

his limbs are very weak, and he coughs an awful lot, and has lots of phlegm problems. he has shortness of breath, but his als dr. does not seem to be too alarmed about it at this point.

i cry every time i even think about what is coming up for us.

thanks for listening.

jackiemax

 

[ahpeditor]

jackiemax,

I feel really fortunate that my wife has so far avoided any problems with speech, breathing and swallowing. She is still losing use of her right hand, especially the thumb. She can walk and stand, but needs a rail to climb stairs.

Last week we went to a wrestling meet in our hometown. The first since our kids were in school, maybe 15 or 20 years ago. She was a wrestling cheerleader in HS (and yes, I wrestled, but not well!) and it was just too much for her. We had to leave shortly after we got there. We both cried all the way home.

I know you haven't asked, but I'll tell you that Lisa has found much hope from starting the detoxifying process. PM me if you want more info as I know that, non-medical "hope" is not allowed on this forum.

I'd like to know how everyone deals with family members who are in denial. I bought hand rails for the shower and toilet and my M-I-L was very upset..."I refuse to believe she won't get well." Her words, not mine. I mean, I have a great deal of hope that some of the things we're doing detoxification-wise will help, but I know that it will catch up with her eventually. I guess I want to stay positive, but at the same time, I don't want to be in denial.

Joel

 

[CindyM]

I think each person comes to acceptance, or not, in his or her own way. I have a lot of family members that think that, because I don't have a DX, there must be nothing wrong with me. These are the same people who have watched me deal with regular health issues in a clear and level-headed manner, the same folks who know that I don't often feel ill, never need meds, always have an active and full lifestyle until now.

Maybe you don't need to convince your M I L that Lisa is ill. When her eyes open to how your wife feels and how she is impaired, she will know for herself. I'd be more worried about Lisa. If her Mom can't accept her illness then your wife may not feel supported. At least she has you to lean on and I am sure ther are others in your lives who can express the loss they feel for her and her situation. Regards, Cindy

 

[Saubier]

Hi Wayne,

I have a confirmed diagnosed of ALS that began with speech and swallowing. I notice that I can make myself understood if I speak slowly, but if I try to talk fast everything is slurred. It's a good thing I speak English, though, because I absolutely cannot roll a Spanish R.

Pappy.

 

[Saubier]

Joel,

Your neurologist should rule out heavy metal poisoning with a blood test, stroke or tumor with MRI, myesthenia gravis with a blood test, perform an EMG and nerve conduction test.

Pappy