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Hariom Cavalcante

New member
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Oct 21, 2010
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4
Reason
Loved one DX
Country
BRA
State
Rio de Janeiro
City
Niteroi
I'm Brazilian, 30 y/o journalist, and recently my ganddad was diagnosed with PLS. He's 83 y/o and always had a enviable health - never have any serious disease, no hipertension, no diabetes... always after blood testing results his levels were always normals - sometimes, better than mine. Two years from now he started to have what some doctors called 'drop attacks', falling down for some unbalance circumstance. He was walking down and, all of the sudden, he related having his left leg's strenght diminished and fell right away. He had in these two years probably hundreds of drop attacks, hiting his head, arms, hips, legs and all boby parts on the ground and fortunatly never broke anything! He went through some 6/7 neurologists in-between these 2 years and after dozens of tests, investigations, resonances, tomographies and on, only one month ago the last doc found through eletroneuromiography and other test I don't quite remmember the name that he had PLS. The doc said it's not such as fatal and fast as ALS but it is a degenerative and progressive disease and that he wasn't diagnosed very quick, because he was already needing someone's help to walk and nurses to live with him in his home to cater him daily, once my grandma is already dead and he has only two childs (my mom and my uncle) and I am the older of his 3 grandchildren, so we can't be 24/7 on his side, even staying and participating as much as we can.

From four months to now he's been getting worse and worse. Four months ago I was able to walk down in the street with him, arm-supporting him, but he could walk. Now, he's totaly prostrated, have some mental confusions (he knows who everybody is, but make confusions with dreams he dreams and the reality; talk about dead relatives as if they were alive; wakes and believes he's not in his house but in someone else's house and on...), besides has a persistent phlegm specially at night and do not sleep well (and always keeps his month wide opened while sleeping). For the PLS the doctor prescribed Rilutek (Riluzole), Lioresal (Baclofen) and a anxiolytic (just to make him sleep better) and he's been taking it since Oct 12th 2010, along with physiotherapy and speech and langague therapy. Few days after he got the first 'drugs cocktail' he got even much worse. Before, he could still walk with someone giving him arm-support. After the first days of these medicines, he was totally prostated, spent the whole day in his bed barely speaking and also needing support to eat, once he couldn't even hold a fork. Wheelchair is now his way to go from one side to the other side of the house, besides having to use diapers 'cos he can't hold until reach the bathroom.

For all this outlook, the doctor first took out the anxiolytic (thinking that that could be relaxing him too much and provoking this prostration state). Even though, he continued almost the same way and we asked the doctor to rethink the use of Lioresal (Baclofen), because we felt that it also made him very prostrated and out of air. So the doc allowed us to only keep the Rilutek (Riluzole) since Oct 18th, and we could perceive some slight improvement in his awakeness (although still wearing diapers, the wheelchair and being metal confused).

I'm really desperate with his clinical status and the fast progress of the PLS, once all the literature about it cites it as non-fatal or much less fast than the progression of ALS patients. I know he started taking the Rilutek just about 10 days ago, but his fast decay in these only 10 days and in the past 4 months in particular are really concerning me. I really would like you guys a support on it, sharing new methods and/or therapies that could cope and help him, as new medicines or even a consolation regarding a possible delay/slowness the Rilutek has to take effect (does this medicine is really effective?), besides I'd appreciate any word/clue to orientate me to help one of the most important people in my life to go through this harsh disease with more dignity and using what is the most modern in terms of treatments and discoveries in the world.

I thank y'all for the time and the patience spent and I'd be very pleased to get any help and comfort from you guys!

PS: As I'm new in here, I'll start now to read past posts to also get information, but I had to write all this before just to open myself and tell my specific issue - I was in the need of putting that all out, so sorry for writing too much... many thanks!
 
Welcome to the forum! Sorry about why you came. It almost sounds like his PLS has turned into ALS. That can happen and because of the progression in the last 4 months makes me think it could have. I really wish there was something I could say that will make it better but there is not. We are here for you. Ask any questions you would like or just share you thoughts and frustrations.
 
Welcome to the group. So sorry the circumstances have brought you here are very rough indeed. I agree with Joel that the situation sounds like it might have progressed to ALS. So sorry.

Maybe you should ask the doctor if this is the case? It might help with the transition to know what your really dealing with. I will pray for your grandpa and for you and your family.
 
Sorry to hear about you loved one going through this terrible ordeal.
It does all sound very fast, especially for PLS, but everyone is different. An examination would tell if it had changed to ALS or not. PLS can have all the same bulbar problems ( eating, breathing etc) , but usually only after several years. There is the possibility that your grandfather had it mildly for many years, and it is now speeding up and as Joel and Joyce said, turning into ALS.
Drugs to stop spasticity like Baclofen do have a negative affect if there is a lot of weakness. Sometimes it's the spasticity that provides the strength to stay upright. I was warned about that by my neurologist.
Most of us with pls have also been through many neurologists as it's such an unfamiliar disease, and very slow moving.
I am sorry that I cannot come up with anything helpful, but will be thinking of you both.

Aly
 
Many thanks Joel, AKmom and Alyoop!

It was a blessing finding this forum and people interested in discussing these issues. Thanks again!

Really enlightening this possibility of his PLS turn into ALS, I didn't know it was possible as I figured (based on what I've been reading) that each one was a different disease, even being a part of a range of NMD. I'll talk about it with his neurologist and try to better understand it, once that my only contact with him was when he diagnosed my grandpa, so all the family went together and we didn't have any information about it (I had never heard of...) so I could make more complex questions.

Alyoop, in fact, as for his age, he's been very weak so , as you said, losing spasticity as an effect of Baclofen made him very sluggish and lethargic. But today I slept in his house and saw him more awake, showing more disposition, although he can't walk or even stand up for 1 sec without 2 or 3 people around him to manage his body - he's totally unbalanced and weak.

Please, I really would like to know which medicine you guys take and how you deal with it (even though I know each body respond ina different manner). Besides, have anyone taken Riluzole, does it work? How long does it normally take to take effect? And have you guys heard or experienced Iplex? And just for finishing, any life changing in feeding helped relief the symptoms?

Thank y'all again for all the words and comfort. Be sure I'll be down here praying and wishing all the best for all!
 
outside of some vitamins, I take baclofen at 60mg a day. I very rarely will take tinazindine if I am having a particularly bad day, and I do have some strong pain meds but only take them during those rare times of tearing ligaments or tendons that seem to happen occasionally when the spaticity gets too much.

From my understanding of what I have read... Riluzole is used to treat ALS and slow its progression. This is why I say you might want to go back to a neurologist to clarify the diagnosis.

Hang in there.
 
AKmom, thank you! I'll check this possibility with his neuro (ALS instead of PLS) and will also question my grandpa's probable FTD state, because he has moments of lethargy and others that he says non-sense things and had lost a little of the spatial notion because in many times he doesn't know where he is and when in the street he greets strange people thinking and calling them for some friends or parents names. For the core family he doesn't get messed up, he still knows who we are (thanks Lord!). Although he can speak, sometimes he says things nobody gets, what makes him really pissed and I understand, but I guess it has to do with his mouth articulation.

Is FTD also possible in PLS cases or that would be fit better an ALS diagnosed?

Hariom
 
Hi Hariom
FTC is actually associated with both Als and Pls. It's not particularly common in either tho. My hubby is a neurologist and thats what he just grunted. Funny how husbands grunt!
Hope you get some answers soon.
Aly
 
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