I can't speak but I can type. Can you?

[Michael FM]

Loosing my speaking would be much worse if I didn't have the ability to communicate by way of writing. But writing has its limits. It's slow and live conversations are hard to have that flow of relating. I was in a car last night with three very close friends and was unable to communicate at the time. I realized that my not speaking causes them to not know me as well as they used to and also that, in a way, I am loosing myself in regard to other people. I'm becoming more alone in the world which is why I registered into this Forum. I'd like to meet and converse with people with PBP to share the inner experiences that we special people encounter.
Please introduce yourself and let's get this threadbare Forum moving!
Michael

[David]

Cheers for being the first person to post in our PBP forum.

I'll see if we can round up some advertising for this PBP forum so that there are enough people to have conversations with :)

[Granny]

Hi,
I will ask the stupid questions.
Is Progressive Bulbar Palsy the same thing as Bulbar ALS, or is it something a bit different. To me bulbar ALS is the form of ALS that involves the mouth area (tongue, throat, lips, jaws) first. Then it spreads to the limbs. Is that the same as PBP?
Leah
EDIT: I just went back and read the introduction to this PBP forum, and it answered my questions!!! Sorry, about that but I will leave this here in case there are other that, like me, did not read the introduction.

[Jingles]

Hi Michael, I am a new member as well. I have not had a diagnosis yet but my symptoms are trouble speaking, swallowing and choking spells. See Previous post. I am really sorry to hear that you can no longer communicate by voice. Thank goodness for CP's . Do you mind me asking when and what your first symptoms were ? If thats to personal... thats okay, I will understand. I have so many questions. How was PBP diagnosed. Is there a special test to distinguish it from ALS, MND or PLS ? Hope you have time to answer back. I have another MRI of skull base and C-spine tomorrow. Had one in Nov. of brain and it was normal. Will see the neurologist for follow-up and hope he will do some other testing. I cannot walk for any distance as well, my left foot drags and I have twitches and leg pain with cramps all night long. Any way just thought I'd say hi and hope you are having a decent day.

Bye for now.

[Michael FM]

Hello Jingles,
Two years ago my then girlfriend noticed I had problems moving food around in my mouth when I chewed. Strangely enough, I wasn't aware of it. I began to notice that my speaking would become difficult now and then as if I was choked up with emotions. Also, I was unable to reach the back of my mouth with my tongue as before.
Then. one day, my girlfriend overheard a conversation in which someone was describing her father's symptoms and they matched mine perfectly. She asked the person about it and found that she was describing ALS. My girlfriend suggested I see a doctor about it but I was in no hurry. Then, one night, she and I read in a book by Rudolf Steiner entitled, "Illness and Karma" that we each choose the major illnesses we get in life before we're born. I know this sounds far out but after reading about the big picture of human spiritual evolvement, it makes perfect sense that before we incarnate, we are spiritually aware of where we are in our development and we receive guidance about how to prepare our next life so that it serves our progress. The suffering from an illness produces strength in us for subsequent lives. The next day, I went to a neurologist for muscle tests and her hunch was that I had ALS. Based on what I'd read the night before and my deep background in spiritual studies, I was actually excited about having ALS because I knew it was for my own good and it would bring a lot of growth. This story goes on and on but I won't continue without your request.
I don't know if there's a special test to determine PBP. I think it's determined by the general symptoms dealing with speaking, swallowing, coughing, etc. I'd like to know more about you and your symptoms. We share the left drop foot and I can't walk far either. I don't have hardly any leg cramps. I wish I could take some of yours from you so you could sleep better. Let's keep in touch. Let me know how your MRI goes. Onwards and upwards. Michael FM

[Granny]

Hello again,
Two neurologists diagnosed me with Bulbar ALS. I was diagnosed April 04, and have lost my ability to speak, lick my lips, kiss, and I have a crooked smile. I also have lots and lots of excessive saliva.
I have a feeding tube for my main nutrition, and only eat puddings, shakes and yogart.
I find not being able to eat a bigger deal that not being able to talk in lots of ways. It is not that I feel hungry or crave foods, I do not, but everything we do socially revolves aroung food. I can write or type what I want to say, but can't go out to dinner, barbecues, coffee, breakfast, or all the the things that revolve aroung eating. I do not even eat my puddings and shakes in public as it is not done with a lot of finesse.
People feel really uncomfortable when you can't eat and everyone else is eating. My husband, who is my caregiver and rock, does not like to go anywhere that food is being served, because he feels it is not fair to me.
Didn't mean to ramble on, but just some "food for thought".
Leah

[Michael FM]

Hey Leah,
I loved your "food for thought". Great pun! I share many of the same problems especially the saliva flooding. My tongue is rather lazy and when a chunk of something lands on the back of it, it automatically swallows it instead of pushing it back up front for more chewing. Many times I gag because of this and then it's a mad dash to the sink to cough and spit it all out. But I'm still willing to try mouth eating - - it's a matter of taking small bites. It takes forever to eat a meal. I've had a tube since September but rarely use it. At least you have a rock in your life. I'm single and my eighteen year old daughter lives with me so I spend a lot of time alone while she's in school.
What do you put in your tube? I'd like to avoid the high sugared and processed formulas. I have a Vita-Mix machine and hope to make my own food out of living ingredients. Have you tried that?
I'm glad to share with you about our similar symptoms. Enjoy this marvelous day!
Michael FM

[Jingles]

Thanks Michael and Leah for sharing your experiences withg me. I do seem to have much the same symptoms. I have fallen 4 times this past week, no real injuries to speak of but it is very scary and unsettling. Had MRI base of brain and C-spine wed eve. now playing the waiting games to get into follow-up mith neuro.

Hopefully I will get a call early next week. I am very emotiional. Not like me. Someone just has to ask how I am and I fall apart. I supose the anxiety of not knowing, but then if I did know I could start taking control of my destiny. I do laugh strangely at the wrong time and sometimes cannot control this. Odd. Is this yet another symptom ugh!!

I should be thankful that I can still eat with difficulty, my tongue just feels paralized and swallowing is difficult. The worst part for me is not being able to walk and hike. Just 2 months ago I was walking 7-10 hours a week. Great stress reliever.

Thanks for listening. I hope you are both having a great day. Smiles for you.

[Al]

Hi Jingles. Unfortunately laughing and crying at inappropriate times are a rarer symptom of certain types of motor neuron disease. I believe the term is called emotional lability. You might find more about it in the ALSA website. But on the other hand you are under a lot of stress right now so that could be a reason too. Try to stay calm if you can. Wait for all the tests to be in and then you will have a real idea of what it is and it may not be as bad as you think. Take care. Al.

[Barbie4]

Hi Jingles;

Just wanted to let you know my thoughts are with you. My friend has another dx appointment next week as well, and we are all on pins and needles waiting.
Try and stay strong. I am thinking of you.

Barb :)

[Granny]

Hi,
What a beautiful day here in New Brunswick!

Michael, you asked about what I put in my tube. I chose to stick with the "conventional" and I do put the processed formula in. I seem to be doing well weight wise and althought the more organic and natural stuff might be better, I just did not have the strength to do all that is required to go that way. I have the resources of a dietition, and follow her advice.

To Jingles and Barbie who are waiting for answers, I hope they come soon and that it is good news. The waiting part is awful, probably the worst part of the whole thing.
Keep your spirits up!
Hugs and prayers to you, Leah

[Jingles]

:-D Thanks for all your good thoughts guys. I have been feeling really down and weepy about the possibilty of this curse. Still am awaiting testing and results. But I awoke yesterday and thought ... enough of this feeling sorry for myself.

I am going to not think ahead but enjoy each day as best I can, keep busy and start living today and stop thinking too much ahead, for none of us really know what is to come in this life. Start living it.

I read all your posts last week about being positive and I thought how can I when I am just consumed with what I cannot do. You were all right. I now know I have to move forward with my limitations. Thanks all so much. The sunshine sure helps too.

Best wishes too everyone.

[Granny]

Hi Jingles,
I think your last post echoes what most of us who have been here for awhile have gone through. Dispair and then picking up the pieces. I like your new attitude! You may turn out not to have ALS and that would be wonderful, but if you do have it, then a positive attitude goes a long way in this thing.
Hugs and prayers, Leah

[southern lady]

Michael, I could write a book on losing the ability to communicate. I had slurring of speech & a choking sensation in late 04. Was diagnosed with acid reflux. My husband & son were first to notice. "Why is mother talking that way?" Soon my friends were on my case too. They thought I must have had a stroke or something. I also would laugh uncontrollably once something set me off.
Finally I consented to see a nuerologist. My brain scan was perfectly clear. No evidence of even the least TIA's or anything. He did test involving getting stuck by needles & running a current through area around my mouth, arms legs, etc. For1 week I had the luxury of thinking maybe I had myasthenia gravis. Then, on Mar. 16, 2005, I learned I had ALS. All of you in the forum know what that was like. Somehow, we walked out & began the 2 hr. drive home. Because of my age & other factors, they didn't give me but 6 months.
It's now Apr. 06 & I'm celebrating every day. I walk, I eat. Yes, I have some issues. Excess saliva: I wear a scopalomine patch(like for sea-sickness) behind my ear & it seems to help.
This is getting long, but if I can ever help you or anyone out there, let me know. I am
"more than a conquerer."

[Jingles]

Hey everyone,

Thanks for all your support over these last weeks. I have just been told I have MND and will be referred to the ALS clinic in Vancouver May 30 for further testing. The neuro did not do EMG because he said it would be done on May 30th appt and did not want to put me through it twice. I am sure I have bulbar onset because of my speech and swallowing difficulties. Its very hard.

The worst part is seeing how upset my family is. It breaks my heart to see my husband break down. Lots of tears this week. I am trying to stay positive but as you all well know its tough. I am scared this will progress quite quickly as I seem to be having more symptoms and weakness over the last month.

I hope I will get more answers and some ways to try to slow down this disease.

Thanks for hearing me out. I am sure I'll have more questions that you all maybe will help me out with.


Jingles

[spud01]

Jingles,

I sent you a private email. I am here for you, if you need anything at all. I am not too far away, just a plane ride away.

Terri

[Barbie4]

Jingles:

I just wanted to say how sorry I was that you are going through this. My friend was officially dx last week and it is so very hard. I hope you know you are in my thoughts. If there is anything I can do, just say it. I am in Ontario, but will always be here if you need to talk.

Stay strong!!

Sincerely, Barb

[Al]

Hi Jingles. Don't give up hope yet. If you read around through some past subjects you will realise that a lot of times we patients plateau. Our symptoms will stabilize and stay the same for a while. No one knows how long it will be but it happens quite often. While bulbar onset is scary there are a bunch of people with it that have had symptoms longer than some of us with limb onset. Try to take each day at a time and think of the things that you can do, not dwell on the ones you can't. Take care. Al.

[woody]

Loosing my speaking would be much worse if I didn't have the ability to communicate by way of writing. But writing has its limits. It's slow and live conversations are hard to have that flow of relating. I was in a car last night with three very close friends and was unable to communicate at the time. I realized that my not speaking causes them to not know me as well as they used to and also that, in a way, I am loosing myself in regard to other people. I'm becoming more alone in the world which is why I registered into this Forum. I'd like to meet and converse with people with PBP to share the inner experiences that we special people encounter.
Please introduce yourself and let's get this threadbare Forum moving!
Michael
hello Michael:I was diagnosed with BPB a few days before Christmas of 2005.I lost my speaking ability in Aug og 2005 and have thought that to be a cruel thing to lose because I had been a very eloquent speaker some have told me. My wife reminds me every day how she misses hearing my voice. I used to sing in the choir and with a choral group at my club. Those two things I miss almost as much as not reading to my grand-daughter. My whole social life was centered around my voice. Now i frrl left out of conversations because if write notes in a goup someone has read them aloud or pass them around. Not many groups tolerate that very much.Mostly I'm alone with my thoughts.

[Al]

Hi Woody. Have you got a Dynavox or other typewriter with speech? It's not your voice but it beats the heck out of writing notes if you can type. AL.

[Blackbird_29]

Hi everyone,
I am still trying to get round operating in this forum but everything takes time!
I have PBP. I started losing my speech and was treated for a stroke. July 04. Passed all test with flying colours. March 05 by process of elimination I have PBP.
Speech now is barely understandable. I try and eat most things,cut up really small. My tongue is almost dead. I use my little finger to move food onto teeth for chewing. Sometimes my finger gets chomped! Other time food slips down throat and I choke, sneeze and panic til I can catch my breath again. I drink slightly thickened drinks like milk, tomato juice and specially thicked juices.
The rest of my body is in A1 condition.I aim to live life to the fullest.
We are making the most of life and travelling as much as we can.
Have just spent 2 weeks in China (walked on the great wall) and 2 weeks in Orlando visiting theme parks and a cruise around Caribbean.
It is an awful thing for all of us ,whichever branch of MND we have. My heart goes out to fellow sufferers.
Merle (Kiwi with PBP) :-D

[hopealive]

Michael,

Hello! I am sorry you are here, but at the same time feel blessed by your insights. I appreciate your positive attitude, and your willingness to run the course in life that has been layed out for you. I live in Albany, OR and noticed you were originally in Corvallis. My mother is the one experiencing PBP symptoms and has her appointment at OHSU on Thursday. I am having a really hard time waiting for this dx. I just feel from everything I have read, and heard that we are dealing with ALS. Did you go to OHSU? Any ideas on what to expect next?

Are you living in Portland now? Great city, I miss it. That is where I went to college.


Thanks so much!
Holly

[jo aust]

Hi my name is Jo. I live in Queensland Australia. My mother was diognosed with MND PBP on the 18th of September 2006. Although looking back now she has had symptoms of this disease for about a year now. She was first told that she must have had a stroke because her speach was slurring , then when the head scan came back they said it must be stress, so she was sent home to relax. When that didn't work they sent her for some blood test and we were told she had Myanthania Gravis. She had to wait 6 weeks to see a specialist to recieve medication. This date was the 18th of September the day we believed everything would be 'fixed'.When mum and dad called me that night I could not believe my ears. I felt like someone had smacked me in the head.I am so glad I found you guys as I feel you understand. Your letters to each other have brightend my days. I have shown my mum your web site and she said she felt better because you are all going through the same emotions and problems as her. My mum is getting her peg operation tomorrow. She is very excited, she is tired of eating. She needs to regain her weight. We are all looking forward to a holiday we are having together next month at the Whitsundays!We are going sailing and snorkling ! We are going to enjoy this while we can. thinking of you all. Jo

[Al]

Hi Jo. Welcome to the site. Sorry about your mum but it sounds like you have things under control. Try to have as much fun as you can while she still can. Snorkeling sounds great. Never got to the Big Ref but did get to Palawan in the Philippines and went skydiving before things got too weak for that. Live for today. Plan for tomorrow but live each day like it might be your last. It's about attitude. Keep mum's spirits up and she'll be better longer. AL.

[jo aust]

You are truly an inspirational person and the world is such a better place for having you here. Jo