Amazed and Wondering??????? Over 2 years ago Paul we were told Paul had Alzheimer’s and would continually get worse. It was bad as many of you remember from my many-venting and screaming posts.It was to the point I thought I would need to place him. But as we continued to see our Drs.,they found the ammonia level problem and began to work on that.As we were working on lowering the level we were also coming off a lot of the meds that he had been on for years. Now he is on no meds for Alz.,no meds for “mental”problems and his ammonia level has stayed fair for several months. His condition is 90% better(to me).Thankfully he can manage his own toilet needs(no accidents for several months)This was a GREAT relief to me. He can now do lots of things that were impossible a year ago. No he is not cured –he still puts his clothes on backwards sometimes- says things that are not always in context to the conversation-or says things WHEN or to WHOM he should not. But he now enjoys doing things again the family,believe it or not he was able to go with his nephew this week deer hunting(no gun) just riding around in the woods with him.But to him this was one of the greatest things in the world because it was a part of HIS life before Alz. I do not know how long this blessing will last,but I needed to share it with you all since you have been so wonderful to listen to me venting through all the BAD times.
Betty this is like a miracle! I can hardly fathom a change for the better with this disease. God bless you and your dear family.
On a strange sad side, I wonder if Dado's ammonia levels are down, or if he can get somewhat better. ? Maybe they can check it when he goes in to the 10 day respite Dec. 3rd..
Coco-It is when Paul's ammonia levels go up that he gets more confused. For some reason the doctor had never checked it until this spring. I do not know just what all is gping on but the change is GREAT and I just hope it continues. Good luck on your respite!!!
Betty--I can relate. The early stage was so horrible for my husband emotionally/behaviorally, that the middle stage has been a relief. Due to lack of insight caused by the disease progression and a good medication adjustment, he's in a much better place. Funny, I expected the situation to become harder and harder for us as he became more impaired, but it has been the reverse (so far). This is surely an unpredictable situation.
Betty how wonderful!!! *happy tears* I pray these blessing could last forever for you both ((hugs))
Marilyn, we are so alike in some ways! I thought late stage would be the death of me.I just knew there was no way I could survive it! Turns out that once Lynn was no longer being tortured by his thoughts, when he sank deeper and deeper into his own little world.... and knowing that that little world is a happy place for him, well.. I know a peace now I never ever thought I would!! Who knew?
As to why Lynn isn't being tortured by his thoughts anymore, yes a large part of this is progression of the disease. Sadly, the more we loose of them, the less they become aware of their surroundings, the easier it seems to be for them to be trapped in their world. But his world is a very happy place and I believe part of that is because I go spend quality time with him daily. He isn't left alone to fade away, something I see far far too often at his facility. He is on Marinol that I believe does make his world a happier place. Making him happy is my top priority.
Mim, I agree with Nikki that the disease progression combined with medications takes away awareness and thus, reduces stress levels and increases happiness for the patient. I also agree with her about daily visits and that if your LO is happy, it makes a world of difference in one's own quality of life. I know what is coming in the future and that there's no way to stop it, but it's comforting to know that at least Steve is no longer tortured emotionally by the disease.
I am glad that Paul has found some reversal of his dementia symptoms by treating his ammonia levels. This highlights that some causes of dementia are treatable and even reversable. Sadly, a friend of mine had a genetic form of dementia in their family. After alot of persistance, they found that it was caused by fluid on the brain. Her mother had a shunt put in. This did help her dementia but her condition had progressed so far, she is permanently disabled. So a person should be careful of jumping to the conclusion that the patient has Alzheimer's. This is from the NIH Medline website.
http://www.nlm.nih.gov/medlineplus/ency/article/000739.htm Some causes of dementia may be stopped or reversed if they are found soon enough, including: •Brain injury •Brain tumors •Chronic alcohol abuse •Changes in blood sugar, sodium, and calcium levels (see: Dementia due to metabolic causes) •Low vitamin B12 levels •Normal pressure hydrocephalus •Use of certain medications, including cimetadine and some cholesterol-lowering medications
I am curious as well - what prompted the doctor to check his ammonia levels. I didn't even know they did that. But on the other hand, I am so happy for you - every bit of normal is wonderful. I am sure he is going to have a great time riding in the woods! That is so amazing!