PBP Diagnosis Yesterday

[revelee2]

After several months of slurred speech, problems swallowing, excessive salivation and a tongue that seemed too big for my mouth, this 56 year male is now the official owner of the label "Progressive Bulbar Palsy".

My career as a Registered Nurse is Kaput due to my speech and my dog can't believe its good luck being taken on long daily walks now!

My reading indicates that I can expect to expire sometime between 6 months and 3 years.
My Neurologist commenced me on Rilutek which can extend things by 2 to 3 months.

At this point I am not keen on taking the ventilator route but I would like to be around to see my 15 year old finish high school, so who knows.

[Jennifer51]

Sorry you had to join this dreadfull club. I was also told the 6 months -3 years timeframe.. Dont accept the 6 months. My first year was not too bad, but the last 8 months have been bad, Do as much as you can NOW. Please voice bank now while you have the chance. Download, free, Etriloquist. Ask loads of questions on this forum, I am sure you will learn a lot and make many friends.......sorry to say Welcome.

[revelee2]

Thanks for your reply Jennifer,
I will check this out but my voice is already quite poor so I am not sure if it is worth banking.

[peter57]

Hi There,
I can echo Jennifer's comments especially about asking a lot of questions on this forum.
It has a lot of very intellegent people on it and what ever you want to know i am sure someone will have either "been their done that" it or are caring for some one who has.

As you can see i am an Aussie too.
There are a few that i know of on the forum , so welcome and sorry you had to join

cheers Peter

[Anastasia]

?

Originally Posted by revelee2

After several months of slurred speech, problems swallowing, excessive salivation and a tongue that seemed too big for my mouth, this 56 year male is now the official owner of the label "Progressive Bulbar Palsy".

My career as a Registered Nurse is Kaput due to my speech and my dog can't believe its good luck being taken on long daily walks now!

My reading indicates that I can expect to expire sometime between 6 months and 3 years.
My Neurologist commenced me on Rilutek which can extend things by 2 to 3 months.

At this point I am not keen on taking the ventilator route but I would like to be around to see my 15 year old finish high school, so who knows.

Oh my gosh, you are so brave being online and so pro active . My thoughts are with you and I wish you well, especially re your wish re your son. Keep net working ,I only wish our Ed would or could see the benefit of sharing emotions, feelings , fears etc.Go well and my best wishes for your family.

[indigosd]

revelee2
oh...I am so sorry that you have this disease :] You will Thank God every day that you found this forum! Another fabulous tool is the patients like me site. You will love the tools for monitoring and the research tools. [I too am a Registered Nurse] Do NOT believe the statistics! My DH is also Bulbar Onset and we are going to fight this beast all the way. We will do Bipap, trach, peg-whatever it takes. We have a soon to be 13 year old son so I can completely relate. DH voice is nothing like it was with his sweet South Carolina drawl but we are going in the end of the month for his voice banking! My only advice is to take it moment to moment and make your memories right now. I tell DH that he is RETIRED from work and to live it up :] Thinking about you and sending you hugs.

[BarryG]

My reading indicates that I can expect to expire sometime between 6 months and 3 years.

revelee2, I am very sorry that you are a member of our club. No offense but I wish that it was so exclusive that we would all be rejected as members! I have been living with this thing for over 2 years now and I am a long way from done yet, don't believe the 6 months to 3 years thing. While there are still no real treatments for this disease many of us are living longer now because of our willingness to accept technological assistance in eating and breathing.

How is your weight? If you are losing weight because of eating and swallowing difficulties then please get a PEG tube. It does make your life much easier and enjoyable when you don't have to struggle to eat and drink. I lost about 40 lbs and have regained almost half of that back using my feeding tube and I am feeling good. I don't have breathing problems yet but I know that many PALS use bipap or a trache and vent to help them breathe and again life is much better when you can breathe.

I have a son in university and I am also going to be around for his graduation. All the best from Canada.

Barry

[revelee2]

Thanks for all the the replies,
My weight is OK I think but I haven't weighed myself since I was last at work.
Might have to invest in some scales!
My 15 y.o. is a girl/woman in transitional phase, becoming independent but we're waiting for the sense of responsibility to kick in.

I'm assuming the pins and needles in my eyelids and other ares of my body are MND symptoms?

The Neurologist discuss what to expect in terms of progression with this.
Keep writing

Cheers
Revelee2

[Zaphoon]

Regarding pins and needles in eyelids - OUCH!

Sensory issues like "pins and needles" are not normally an ALS symptom but neither are a lot of other things that pop up so, who knows.

Welcome aboard but sorry you are sailing on this ship!

Zaphoon