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Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
Hello my name is Gracie, my husband has been diagnosed with PLS 4 1/2 years ago. He has dramatically progressed every year. Within the last 6 months his speech has been effected. He slurrs his speach, sometimes his tone is lower and I have noticed when he talks he seems to run out of breath. A friend asked me about Progressive
Bulbar Palsy. My question is: would that be associated with PLS or could he have changed to ALS or is PBP its own disease with no association with PLS or ALS. He has very poor balance, weakness and lost the fine motor movements in his hands. It all started in his legs with clonus, babinsky of the right knee and has moved upward and the left leg now shows the clonus etc. Pretty confusing stuff. Please let me know if anyone has any answers.
 
Some people with PLS do have bulbar complications early on. I know a chap that has a Peg tube after 5 years with PLS. There is also the chance that he has umn dominant ALS, or that it has become ALS.

Unfortunately that is not very helpful. Your husband really needs to see his Neurologist for assessments such as an EMG to determine if LMN are now involved. If your husband had UMN signs in his leg then It would not have been pure PBP. but really your doctor knows best. These illnesses can move all over the place.
 
hello gracie,it has been a long time since you have been on the forum.
last time we heard from you i think you were getting your home in order.

i agree with aly's reply.
have you raised these concerns with his neuro? if not get an appointment asap.
please dont be a stranger,we are here to help and support each other.

thinking of you both.
caroline
 
Thank's for taking your time to comment on my post. We are now seeing the neuro every three months. The last time we were there he prescribed a medication that people with parkinsons disease take, it was carbidopa/levodop 25/100, 3x a day for the tightness and weakness in his extremeties but it didn't help so the neuro discontinued it. It is so sad to see how much my husband has progressed. He does everything so slow. The neuro had him tap his fingers to his thumb rapidly and it appeared to take forever, he said it feels like each leg weighs 100lbs to lift and his steps are very very small steps and shuffles and cannot walk without 2 canes and leans over when he walks or he falls backwards. Doctor has taken every test out there and hasn't changed the PLS diagnosis however with the speech and breathing thing going on I am not convinced it hasn't changed to ALS. This disease is Pityful, steals every bit of self respect a person has and along with everything else you have the bladder frequency and all the problems that brings with it. There never appears to be any answers only questions with this disease, very sad.
 
Yes Gracie it is very sad, and frustrating. We live in a world that expects answers, cures and NOW. MND 's certainly teach us that, some things are just not curable, and science has yet to even establish the primary cause.

Has your husband had an EMG recently ? If it has turned to ALS the clinical examination would be pointing that way, so maybe your neuro has found no reason to suspect that the LMN have become involved. Bulbar problems certainly can be a problem in pls, so maybe your husband is just unfortunate and has developed them early in the disease process.

So sorry about your situation, it certainly does suck. Best word for it :)
 
Its sad to have to go down this road for anyone. I hope and pray the best for you all.
 
It is so confusing; even day to day sometimes.
The amount of sleep and good eating have a considerable affect on how I am feeling on any given day. At times my muscles will "wake up", but then it takes days to recover if I push my exercise.

My fear is exactly what you are asking about.....PLS can shift to full blown ALS and symptoms or progression can accelerate. I don't like to fess up to myself, but my walking is detererating since December.

Do you see your nuero on a regular basis? Mine says that he can tell me more once a base line is established. Sending good thoughts your way.

- Jerry
 
It's my understanding that people diagnosed with PLS can develop Psuedo Bulbar Palsy that is brought on through upper motor neuron involvement. There is a big difference between this kind of bulbar palsy and the other kind that is brought on through lower motor neuron involvement.

I'll leave the distinction to those on the forum that are more learned!
 
When I was referring to PBP I should have been more specific, I was inquiring concerning Progressive Bulbar Palsy. You know you read and research then read some more and it feels like you are on a treadmill, moving but going no where. My husband goes to the Neuro every three months and the next visit I will address my concerns. I hate to bring to much up to the neuro because it only alerts my husband too just how grave his condition really appears to be. He really struggles to get through each day with my help and major depression hasn't hit him yet but as we all know it is just around the corner. My only priority is to make everyday the best possible day for him, I cannot even begin to share with you all the extremes I have gone to in 4 1/2 years and yet here we are, trust me when I tell you healthy living is not the cause or cure for this dreaded disease. We both lost our beautiful 42 year old daughter in 2009 in 4 days with pneumonia, loosing her so quickly was absolutely devastating but I would never want her to have had to suffer like my husband. God is my refuge and I will continue to "Keep Looking Up".
 
i know a few years ago you tried a healthy diet with suppliments...............my neuro always said eat healthy and drink plenty of water to his patients.
yes we can drink plenty of water to keep the brain hydrated and eat well to nourish it but sadly these things help to keep a healthy brain ticking over not a deseased one.

to determine bulbar palsy (lmn) and pseudobulbar palsy (umn) an emg needs to be done,similar symptoms.

could you have a quiet word with his neuro on your own?
you should really be notifying him of any changes,please tell him your concerns.

thinking of you both.
 
Thanks Caroline, you have a very kind and loving way about yourself, that shows of a beautiful spirit. Yes you have a good memory also. I eliminate all preservatives that my husband eats, no chemicals only natural, organic food and toiletries. I only cook on iron cookware to eliminate any aluminum. Had all his teeth re-filled to eliminate any zinc or nickel and he only drinks purified water. I detox him once a week and still he is getting worse as we speak......imagine that? If there is something I am missing I surly do not know what it could be. You know I may have noticed just this week that his mouth may droop a little on the left side, he doesn't know that but I have seen this when he is relaxing and I hope it is just my imagination, is that something that may or may not happen? Thanks for all comments given, God Bless!
 
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