Hello, new to this forum.

[alador]

I have been reading on this forum for several months. My husband began having slurring of speech in February 2011 and this was followed by difficulty swallowing. After extensive testing by a local neurologist and a referral to Duke ALS Clinic with two visits there he has been given a diagnosis of Pseudo Bulbar Palsy. Does anyone know the difference between this and Progressive Bulbar Palsy?

He is losing weight and a PEG tube has been recommended. He also is taking Ritulek knowing that this is not a cure. He is not having the emotional outbursts sometimes associated with Pseudo Bulbar Palsy.

I have been most thankful for this site as I try to educate myself about this awful disease and how best to take care of him.

I feel we should not complain about this turn in our life as so many others are affected at such a young age, however it is not easy to watch someone you love go through this.
We celebrated our 60th anniversary in August in Kauai, HI with our family and were so glad we could make this trip.

Please excuse the length of this, but know in the coming days I will need your support.

 

[Shane the Pain]

Hi Alador,

I'm sorry to hear about your husband and don't know the answers about Bulbar that you are looking for. But i am jealous that you had so much time together !

It is my opinion that Rilutek is a waste and you should not bother taking it.

I wish you and your husband the very best !

Shane the Pain

 

[HelenL]

Hi alador, welcome to our forum family... I don't take the Rilutek either, but many people do. I would recommend checking out the clinical trials, as there seem to be a lot of good ones out there right now.

I hope you and your husband both come on this site, and join us as we vent, scream, mourn, pray, laugh, poke fun, and just plain chat with each other. It's a lifeline for me.
Helen

 

[susanf]

Welcome and sorry about your husband. As Helen said we're here for you

 

[notgivnup]

So sorry Alador, hang tight, bunches of great people here to help...together we can do this.

 

[Felica]

Sorry. You had to find us alador. I was diagnosed. With ALS. Bulbar palsy onset. I do not know the difference. I was Diagnosed in June. Then back in hospital in Aug with severe dehydration. Had to wait 4 days. Before they could put tube in I do not regret it. Love my tube. Go ahead and get the tube. Your husband will still be able to eat with tube. Tube makes it easier to stay hydrated. And keep from loosing weight. I did not like the rilutek. Refused it.
Hugs.
Felica

 

[alador]

Thanks to all of you for your support. I am sure I will be posting more as new situations arise. It is good to know there is someplace to go to vent.

 

[lakelover]

I am sorry to hear about your husband's diagnosis. My husband's diagnosis was also confirmed at Duke Oct 25, I will never forget that date. I am still trying to come to terms with everything. My husband is taking Rilutek with fatigue being the only side effect so far. Duke felt very strongly that he needed to be on this medication so we decided to go with their advice. Thankfully the people on this site are extremely helpful and supportive and I have learned a lot. I am envious of your sixty years, I have had only 39 and was looking forward to our retirement years to continue the enjoyment of getting old together. I feel sad until I read about the other people on this post. Many are young or middle age with young or teen age children and I thank god that we've had the years together to watch our son graduate from college, get married and give us two adorable grandsons. I am thankful for what I have been given but it is extremely difficult to watch someone you love with all your heart loose the ability to do things they've enjoy doing. There is not a day goes by that I don't shed tears but never so that he sees them. I'm am staying strong for him. Good luck to you and your husband.

 

[alador]

My husband just started the Rilutek this week so will have to watch for side effects. In addition to this diagnosis he is dealing with ortho problems having to have his knee hardware removed in October due to infection and has an antibiotic spacer with proposed surgery in Feb. to replace knee hardware. He uses a walker as he cannot put full weight on his knee.

I, too, am having difficulty dealing with all this but we are thankful for a supportive family and faith that keeps us going.

We are in the process of switching to the ALS clinic in Charlotte as that is much closer, but hate to leave Duke. They were very compassionate and caring.

My thoughts are with you as you deal with all this and all the many others on this forum.

 

[tammyg]

WELCOME. So sorry about your husband. My dad had Bulbar Palsy. The only difference between progressive and Pseudo is the emotions. They are both basially progressive and move down from the throat, instead of up from the feet and lower legs ect.. The Pseudo has to do with emotions, he can have laughing and/or crying phases. All the ALS's are horrible but the bulbar was the best onr for him to have(in my oponion) he could not talk and had the PEG but was still able to drive til he went "to the party on the sky".I am sending you a friend request, if you ever have any questions, I may be able to help. Alot of people on here are smarter then some doctors .
Sixty years WOW. You should get the medal of honor Maybe I should be getting advice from you, I am only at 20.

 

[tdamess]

age does not really matter when your heart is with a person with als it is an awful diease hugs

 

[bytheseadana]

Actually I'm not new to the forum it's just been a very long time since I've been on and now I'm back and under a new name. I started on the ALS Forum I believe back in Feb. of 2009 when my ex husband was diagnosed with Bulbar ALS. I went under the name of Dana Razo now I go by the name of Bytheseadana. I hope to reconnect with my friends old and new. ALS is such a horrific disease and I sympathize with ALL whose lives are touched by ALS. ALS destroyed my marraige and if I can help one person, that will warm my heart and make my life look a little brighter.

God Bless

 

[joni51]

Sorry for you r husband's diagnosis, for both of you. My husband is bulbar, and it is very hard to watch the changes I can tell you. We are here for you and him to help, however we can..

 

[Al]

Welcome back Dana. Jump in when you like.

AL.

 

[bytheseadana]

Its been a while, i was wondering if there was anyone else out there who has experiexed anything like I did.