The Bulbar Roller Coaster

[rocmg]

people are a-holes. but they have their own lives to lead and their own families to raise and look after. no one knows what will happen to them or theirs, so they should be a bit more sensitive and responsible. probably ignorance, but infuriating nonetheless.

 

[Tfisher]

thelma313,

Sorry to hear about your dad having a rough time lately and that you had to do the heimlich. I never thought that the heimlich would become almost second nature to me. My dad and I just bought my mom one of those mini pc's and put the etriloquist software on it and it has a camera so she can gmail with people and see them, she is still getting aquainted with it but I think it might be easier than the lightwriter since that keyboard is not set up like a regular keyboard.

Glad to hear there will be someone with them on their trip back. How is your mom holding up with all of this?

Hang in there.

Tfisher

 

[BethU]

Your poor father. I know how he must feel. The frustration of not being able to speak is overwhelming ... and I find that I also get angry at people who can't understand me. The DynaVox is a point and click system ... you finger tap on icons for preprogrammed messages ... so it eliminates a lot of typing. But if you want to say something not programmed in, you have to type. (That's my husband's problem too, and a lot of men in his generation ... they don't know how to type so are baffled by computers because they don't know the keyboard!) However ... there are LOTS of pages of comments on various topics to choose from in the DynaVox, and it's actually kinda fun to program in stuff. (I put a few x-rated statements in there for special occasions.)

If your dad's neurologist agrees, maybe your dad would consider taking Zenvia. It's not a "mood" or psychological medicine, it's actually for diabetic pain, but it affects the whole bulbar area. I'm in a clinical trial for it, and it not only helped the emotional lability, but also increased my energy and helped my speech a little ... I was able to give more "push" to my voice.

It's hard to explain to people (even ALS patients) that the emotional lability is not simply a normal reaction to being sick, it is a process affecting the part of the brain that controls the expression of emotions. Sometimes it's called "emotional incontinence" and it's just that ... like your bladder decides to empty itself while you're in line in the bank. Sometimes PALS will start laughing hysterically and uncontrollably at a funeral. It's not because they think it's funny ... the part of the brain that controls the EXPRESSION of emotions has just had a kind of a seizure (layman's expression ... I don't understand what really happens) ... but it's like that. A sudden seizure where inappropriate emotions burst out and you can't control it.

Anti-depressants help, fortunately. So does this Zenvia drug. Your neurologist could have it made up at a pharmacy. I hope it will help your dad to know that these emotional outbursts are not "weakness" and are not at all reflective of his real personality. They are a recognized and very common symptom of this disease. It's something that needs to be treated, just as swallowing issues do.

Blessings to you both. Geez, I wish I could cure this damn disease for all of us.

 

[thelma313]

Tfisher, I can't even believe that I knew how to do the Heilmlich. I've definitely never had to do it before but it works like a charm! My mom is a real trooper and is handling this very well. She encourages my dad to eat and cooks up a storm every day. Thank God for good moms. I am very happy to hear that your mom is getting aquainted with the etriloquist software. Good for her!

Beth, thanks again for more great advice. I will definitely suggest the Zenvia to him. I think that he might be receptive to it. He has a wonderful female neurologist who is a real gem. I have explained to him that the emotional outbursts are part of his disease and he said he knows that. He often tells people he can't help it. They don't always understand what he's saying but either my mom or I translate in that situation. I can only imagine the frustration of not being able to express oneself freely. I am a real chatterbox myself so I would definitely be even more impatient than he is.

Also he has already said that as soon as he gets home (in a month) he will get a speech aid and I think that the DynaVox sounds like a good option. He is 68 and like I said he's never touched a computer but he is a very smart guy a fast learner. I think he could handle it and I'd definitely help him out with it. I am a total gadget freak! Beth, I really do wish you could cure this damn disease too!

Thank you all again. I really appreciate the support and great advice!

 

[Wendi]

It is so good to return here after a few weeks away and find all your comments.
I have just been diagnosed with Bulbar ALS/MND, after having speech and swallowing symptoms for about 9 months. My legs are weaker lately and it is a very lonely place to be. My speech has just about gone now, only my dog understands me.lol. :wink:
I don't have anyone to care for me, not close anyway, I daresay they will get together and sort out something if I become worse. I have sons all so busy, my husband died three years ago. I really feel sometimes what is the point of fighting this, I have no life anyway.
Yes I am a bit depressed today, not being able to speak is so lonely, I have had illness all my life so this is just something else, but much more deadly.
Interesting about the speech hoodacky's with the computer, have been wondering if it would be worth it to have something like that. I find writing notes the easiest right now.
I have to decide about a peg, so far I can eat, it is thin liquids that are difficult and taking tablets and capsules.
My mother had this so I know it.

 

[BethU]

Wendi ... I'm so sorry about your diagnosed, and the loss of your huaband. I hope your family will rally round and give you the support you need.

The speech dohickeys are very much worth it. I just got a DynaVox, and being able to answer the telephone and make calls is a life-saver. I didn't realize just how impaired we are without speech until the last several months, as I could kinda sorta make myself understood for a long time. Once I programmed in enough phrases and gained confidence and speed with the thing, I can now actually (almost) "converse" normally. It is a lifeline to the outside world, and being able to talk to friends and relatives again is priceless. It really, really gives me back a sense of control over at least one part of my life.

I just got my PEG a couple of weeks ago, and am very glad I did. I can still eat by mouth, but it is so much less hassle to just pump a can of Ensure straight to the tummy and be done with it. The implant was an easy procedure, and it is all quite tolerable, except for having this stupid thing dangling from your midsection.

I think I'll trade my cats in for a dog ... they pretend they don't understand a thing I say unless it ends with " ... and here's dinner." (Actually, that goes for my husband, too.)

I'm glad you're with us on this forum, but sad that you are, if you know what I mean. There are some wonderful people here, and I know you will find support to fight the loneliness.

 

[Wendi]

Thanks Bethu, it is good to be here.
Could you explain to me how the Peg is inserted, what anaesthetic is used, how long it takes? I read about it somewhere here and it was interesting, but need more information. As I have ME/CFS a full anaesthetic could make me so weak it might not be worth it. So I need to evaluate. I will ask my Neuro, but am interested in how it is for you.

Also the DynaVox, how does that work, just looked at their site and got completely confused?

Yes my dog understands my funny talking, but my cats are comforting with their purring.

Thank you so much for responding, I have been feeling very alone lately.

 

[BethU]

Wendi, often the PEG implant is done under local anaesthesia. Another Forum member, Sharonca, had hers with no anaesthesia, but she's braver than I'll ever be.

Because I have heart disease as well as ALS, my gasto guy said he wanted my breathing under complete control the whole time, so consulted with an anesthesiaologist (am I spelling anything right?), and they put me completely under with a sedation that worked instantly, and also wore off completely 10 or so minutes later. There was no twilight stage at either end. I remained completely clothed the whole time, and when I woke up, I found I had kicked my shoes off ... one was all the way across the room. I imagine that was when they stuck the camera or whatever down my throat. There are techniques where the patient lies on an x-ray table, I believe, and they don't have to do anything intrusive.

The procedure started at 9:30 a.m., lasted about 15 minutes, and I was home by noon.

The DynaVox is confusing because it has so many bells & whistles ... I think unnecessarily complex. But once I got to the phone page and started playing with it, I was convinced. They're expensive ... about $8,000 for the top one. (It's also a laptop computer and connects to the Internet.) My insurance paid half, and MDA (Muscular Dystrophy Assoc.) paid the rest. I assume in Canada, it would be covered by your medical program. There are other computer programs that are cheaper and probably simpler to use, but this works. It is just such a relief to have telephone contact with the world again.

I have a little portable "Light/Writer" speech device that I use when I'm away from the DynaVox, and I've typed out little messages to speak to the cats when it was important that they understand that they are being very good kitties. I'm hoping that no one ever saw me do that!

Take care.

 

[DgtofTNfan]

Thelma313,

I just wanted to say that I am thinking of you and right there with you.

My Dad recently went in for his PEG and was found to have pneumonia. He was treated, released and started on bipap. Two weeks later he is finally feeling better. Up until about a month ago he was still driving and doing light grocery shopping, etc. After his scare with pneumonia he is pleased that he can ambulate around the house. We are hoping with the much improved nutrition and bipap he will continue to feel better.

He is more emotionally labile as well. He just started on an anti depressant so we will see if that was helpful.

I went with my parents on the out of town trip to his neuro appt. Mom drove there and I drove home. My Dad has always been the driver. Mom and I always get lost! He spent most of the trip pretending to hold on to the dash and teasing me. I know that was so hard for him but he kept his game face on.

Wendi,
My Dad was sedated for his PEG, he did not have anesthesia. The procedure took about 20 minutes. He had a scope with a light/camera on it passed through his mouth into his stomach. The light shown through the stomach wall to the outside of the abdomen. This is where they made the incision and placed the tube. It extends about 1 & 1/2 inches inside his stomach with a stopper to keep it from coming out. It extends about 12 inches outside with a clamp. The procedure went very well. He was sore for a couple of days. My Dad coughed nearly all day long before the tube and now he is so much more relaxed and is very glad he got the tube. Plus he no longer has to worry about how much he eats before tiring to maintain his weight. He is glad he had it done.
Hope that helps.

Dana

 

[thelma313]

Dana, thank you so much for your thoughts and support. I know you understand only too well, unfortunately. My dad is pretty good at keeping his game face on too. I am just so worried about him spending close to one more month here in Florida before he goes home and sees his neuro. I talked to him today about not driving back to Canada from Florida and he says he plans on "taking it slow and spending at least 2 nights in hotels along the way." I am not comfortable with that at all. My mom and I are making other arrangements.

May I ask when your dad was diagnosed? I am so happy to hear that he is feeling better with the peg and bipap. I pray my dad follows suit. You are in my thoughts as well. I hope your dad has hit a plateau! All the best to you and your family.

 

[DgtofTNfan]

Thelma313,

My Dad (69) was "highly suspicious" for ALS 1/17/09, diagnosed "90%" on 2/17/09 and just confirmed via EMG/NCS on 3/2/09. He started coughing from aspiration in Feb 08. This is all fairly new to us. Thanks for the well wishes.

I would be worried too if my parents had to drive from Florida to Canada as well. Does your mom drive? Hopefully you guys can work something out for safety and still maintain your Dad's dignity. I know that is going to be a difficult negotiation.

I have been fortunate that my Dad has not taken on something he was concerned he could not do. It turns out Nov 13 '08 was the day he decided to stop using power tools due to weakness in his hands and a near fall from a ladder. The day of course had significance and my heart just ached for him when he told the neuro doc. He has also elected to stop driving for now.

He did refuse a disabled parking placard for the car. I insisted and told him I was getting the placard for Mom. I told him if she had to drop him off and park the car, she would get lost finding him. We agreed to get it and put it in the glove compartment when it was not needed.

He also refused a rental wheelchair but again I insisted for "just in case" as the ALS doc is out of town and a visit to his office will make for a long day and the campus is large. Dad was relieved we had the wheelchair after the last MD appt. We left it in the car but he asked me to go get it as he did not think he could make it the distance from the MD office back to the parking garage. His endurance has been really zapped after the bout of pneumonia.

I know there is a fine line between caring for him and his autonomy. My Dad and I have always been straight with each other and manage to meet in the middle.

So that is how we have worked things out so far and I am sure your family will do the same. Well wishes to you, your Dad and your family.
Dana

 

[Wendi]

Thank you Beth and Dana for explaining about the Peg. I am coughing a lot so I think it would help, although I am still eating well and have not lost weight.
I am glad it seems I will not need a full anaesthetic to have the PEG inserted, that was worrying me. I am waiting for an appointment to sort all this out with the neuro, and now I have an idea of what happens.

Thanks BethU too for the info about the communication bells and whistles, seems I may have some fun after all and I bet my grandsons will be impressed. :smile:

My mother refused to have a PEG and she just wasted away, but she was 87 and had other health issues and did not want to live on. I am younger, 63.... well I suppose that is old, I know many younger people get this. So I want to give this beast a bit of a fight. I had just got the ME/CFS a little better and have been able to get out a bit, when this strikes me.

I am fortunate I have a disabled park card, I had it for the ME, it is very handy. I see no shame in having that, it is a Godsend at times.

Are you able to tip ordinary food into the PEG? Man I will miss my chocolate smoothie!
Can you put medication in that way? I am starting to have trouble swallowing tablets.... which I need.

Thanks everyone this is an awesome place!

 

[thelma313]

Dana, thank you so much for your well wishes. I send them right back at you! I spoke to one of my cousins tonight who is more than happy to accompany my parents on the long drive home. Thank God! I don't want to make my dad feel bad about his autonomy but I think he will agree. He has been the guy that helps everyone out for so many years. He's literally done so much for every member of our family and we are all indebted to him so I hope he takes it well.

My dad also keeps the disabled parking placard in the glove compartment when it's not in use! Our fathers are almost the exact same age too. My dad is turning 69 this month.

Hang in there, Dana!

Wendi, I am so sorry that you have to be here and also very sorry you hear about your mom. Please keep us all posted on your PEG. I should think you could still enjoy your chocolate smoothie. Get a straw and take your time with it. I explained to my dad that with the PEG he could eat whatever he wants and take the time he needs with no pressure or nagging from my mom, or my sister or me to eat more. We try to feed him fattening food in the hopes that he will put some weight on but it's hard when it takes him so long and it's hard so hard for him to swallow. I am pretty sure I've convinced him to get one. Best of luck to you, Wendi!

 

[Wendi]

Thanks Thelma,
Your Dad is very fortunate to have you. I wish you all the best with helping him.
Thanks for your helpful information. It is so good to be where people know what I am needing.

Thanks everyone!:smile:

 

[BethU]

Wendi, yes you can put regular food in the tube if you use a blender first. And many people take their meds that way. I've been having a heck of a time with pills for months, and was only told recently to take them with applesauce or yogurt or pudding. And I found that a spoonfull of yogurt takes them right down ... no problem at all. (Applesauce also works.) I'm sure I was told this before and it went right over my head ... so I'm still taking them by mouth for the little extra bit of calories and protein, and also I love yogurt, and don't feel like grinding up the pills.

I'm glad you're going to fight this monster. I take every little victory I can get. My niece brought me a little plastic gizmo for pop-top cans, so now I can feed the cats by myself again. Score one for the PALS !

Hang in there.