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

[spud01]

Jingles

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]

sorry

Jingles:

I just wanted to say how sorry I was that you are going through this. My friend was officially diagnosed 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]

Where did you get your diagnosis- I am an Oregonian

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 diagnosed. 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]

Just new and not good on computor.

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