Hariom Cavalcante
New member
- Joined
- Oct 21, 2010
- Messages
- 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!
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!