As is typical with FTD, it plateaus and then sharply declines. Jim has had another decline. It took me by surprise today when I arrived to pick him up for our picnic and he said he wasn't feeling good and had forgotten to ask for a pass. The nurse took me aside and told me that PT had been called in yesterday because his physical capabilities, mainly his legs, had significantly weakened. His Dr and PT are requiring him to use his wheelchair and only use the walker when being assisted. Given his size, they are very afraid of him falling and really getting hurt. He now is requiring assistance on all transfers. I managed to wrangle a pass and we left for our picnic, but we were unable to find a spot in the city and were concerned about his ability to get on and off of a picnic bench. So we ended up at Applebee's . As we entered the restaurant (with his walker he stumbled 3 times, being caught by the manager the 3rd time. After lunch we headed back to the hospital. I called ahead and his nurse met us in the parking lot with his wheelchair. He is also having more and more difficulty with all-over body tremors. His nurse described the one she witnessed as almost looking like a seizure. These leave him tired and a bit more weakened. Today he told me that his ability to converse is getting more difficult, it varies. I was on the Mayo Clinic site and saw a new variant to the types of FTD: Behavioral, Language, Pick's, and now the newest, Parkinson Like. Jim's neurologist has been talking about his Parkinson like features for some time, but he does not have Parkinson's. What causes the symptoms is the disease going deep in the areas that control motor skills such as tremors, walking and feeding oneself. Jim is still using the weighted utensils, and covered cup, and now is on a chopped food diet. He is supervised at all meals, either by a med tech or a speech therapist. On an upside, he is reading again! He is re-reading all his old Tom Clancy novels which is amazing us all. He laughs and says if he reads them over and over, maybe he'll remember them :o) He still has his sense of humor. He is anxious to get placed in a Nursing Home so that he can have visits from his kittens. He really misses them. We received news today, not to get our hopes up, that there were a couple of positive phone calls regarding possible openings, one nearby, one two hrs away.
Sunday he did not recognize me until I spoke to him. He was quite upset about it then quickly forgot when neice Deb and Peter arrived from Seattle. Of course He really stepped it up for their visit.which makes me look like a paranoid nut case. He was talkative and funny. We had a great visit, nothing like what our ususal visits are like.aghhhh. Lastly, I got a call today that his neurologist is setting up his 6 month follow-up PET Scan. This will give us a better idea of how far the disease has spread and if the spot of Alzheimer's has progressed. Please keep the prayers and positive vibes coming.

PS: Little Diego has begun to show the true extent of the trauma he was exposed to. He has made it perfectly clear that he wants to stay here in the "happy house" and not go back to the "bad house". We finally got all of his toys, and that set off an emotional flood that lasted hours last night. He also had refused the chance for all of us to go meet Mom for ice cream. It was an adamant NO! Thank God his play therapist is here today and tomorrow. Caring for my little one and his brother has taken up more time than you can imagine, and is exhausting. That is the reason I haven't been on line as much. Thanks for listening as always, Love you all, Susan

Susan, thanks for the update, hang in there, love those little ones and your own big one!

Positive thoughts and prayers headed your way, Susan.

Confabulations have begun. Jim was telling me today that he was looking forward to the nursing home placement because they had told him that then he could come home and sleep in his own bed sometimes. Then I wouldn't miss him so much. My poor man, still worrying about me. He also couldn't remember why he needed to use the wheelchair only that he was supposed to use it.

Susan-we're here for you. Try not to worry about things you can't change. Kiss P&J for me.

longyears, I was just going to add to your comments but you have removed them! What you say about ALS and FTD is exactly correct. That is my husbands diagnosis. The FTD symptoms (without aggression or inappropriate behaviour ) preceded the physical symptoms of ALS by 2 years. It is such a cruel, heartbreaking disease and it progresses rapidly once the physical symptoms begin.Hopefully this won't be the diagnosis for Susan's husband.

Contribution withdrawn

They tell me that in early stages, PT can be helpful with flexibility, but as time goes on it does no good. The brain simply stops telling the legs to work. That's where we are at. Up until a 2 months ago, Jim could walk behind our lawn mower. The F in FTD should stand for flippin fast. This is happenning way to fast for me. I know it will be over way before I'm ready, but then who is ever ready. I take strength from those who have lost loved one without any warning. We lost our lovely neice Lesley, 23 yrs ago this month in a tragic car accident. She was sitting in traffic and was hit from behind. She was only 17. At least Jim has had a good life and I have time for the long good bye, just not long enough, for me I guess. I'm just so down, and need you guys so much. I wish I could gather you all together for a huge group hug. Arms around, Susan

PS: DD had a 2nd car accident in two weeks. This one with the rental. I'm taking my car back as soon as it's repaired. Too sad.

You said it, Diane. Hang in there, Susan.

Absolutely, Briegull! Goes without saying :))

Susan you are so right-the outcome is the same.

Yes, we have been to the VA Hospital that is terrific. The 6 VA Homes are lovely. They are homey and clean, bright, smell good, the staff is always smiling (we've just walked in unannouced to see) there are just no openings. Our Neurologist is trying to narrow down what type of FTD Jim has, whether is the behavioral Varient, he does need Seroquel, the Parkinsonian variant and had considered the Lewy Bodies. I need to just let it go and deal with what is; I know this, just sometimes I worry and start researching AGAIN. The great report from Austrailia got me going again. I put it away :o)
Thanks for your concern, that's why I love you guys.

Prayers are needed! Jim is having his Gould (State) Assessment tomorrow. The nursing home across the street from the hospital HAS AN OPENING! We're going on 6 wks wait now. So all we need, is the Gould Assessment RN's approval and off he goes. I desperately need some good news. As some of you know we lost our beloved Holly Berry yesterday to cancer. I was in shock, thinking she had an infection in the wound still healing from surgery a month ago. When the dr came in and said it had spread so fast, that she probably would only live 2-4 weeks and with increasingly unbearable pain. I knew our pain med, the infamous one that Jelly ate, wasn't helping, but again thought it was an infection. Holding her in my arms as she passed on, did me in. I'm still numb. When is it going to stop?

I got a call from DD employer to say that she had not shown up for work and that she had heard that DD had been taken by ambulance to the ER during the night. I flew over to her apt AGAIN, had the Police meet me and there she was, in bed, wine next to her, missing her underwear. They had found her somewhere in town on the sidewalk like that. She remembers nothing. The police Chief showed up and shared a confidential story with her, in an attempt to get her to agree to go inpatient for help, but she refused. He fridge was full of beer. I also found out that before she crashed my car she had been letting one of her boyfriends drive it while drinking. She admitted it, of course she was still somewhat intoxicated. I talked with the social worker and they will be taking custody of Diego at our meeting with DD on Friday and legally placing him with me. Then I can apply for Permanent Guardianship.

Meanwhile, I'm waiting for the adjuster to come and assess our Mold issues and need to see if my brother can do something about the carpenter ants that showed up again, one month after our warranty expired. Of course.
My poor brother can't come for a visit without being put to work. He's a good guy, does all this work and won't let me pay him or for the supplies.

So anyway, please pray for a lousy assessment,so that poor Jim can get out of the foolish psychiatric ward.

S

Susan, praying that all of these things will work out for the best FOR YOU. This is just too much for one person to bear. Hugs to you. Hang in there, friend.

Sympathies on the loss of Holly Berry -- it's rough to lose them. Hoping and praying that the assessment goes well and Jim can be admitted to the NH.

Susan, you're way past due for something to go your way. I hope the assessment results in Jim finally getting placed. I'm so sorry about the loss of Holly. Sending another long length of rope and a big hug.

Susan, I hope the assessment goes well and you can get Jim out of there. (Finally.) So very sorry to hear about Holly Berry. I hope I have the courage to hold my cat like you did if or when the time comes. I had a hard time just taking her to the vet this morning to have her teeth cleaned under anesthesia. I'm at a loss for words when it comes to your daughter. Hang in there, something, just even something small, has to go right.

I should be yelling WAHOO! Jim "passed his assessment" and found in need of Nursing Level Care. I feel relief, but sadness too. I am so happy for him that he will be moving tomorrow, but the realization that he won't be coming home feels like a punch to the stomach. On the upside, his roommate is mute and hard of hearing, Jim was happy to know he will have quiet :o) The Nurse Manager planned it this way. I love the way they run the NH, it is done on a 12 hr shift so the nursing staff is the same each day. One day nurse, one night nurse, and the same people rotating on weekends. Mom and I plan to beat him to the NH and set up his room with pictures, quits and other homey stuff. So now that something positive is happenning maybe we can get on a roll and have a good appt this afternoon with the insurance adjuster, a girl can hope right. Thank you all for always being there/here for me. Love you all

Arms around,
Susan

So glad for you all, Susan!! Keep that rope tucked in your pocket in case you need it.

Susan, I wish to add my hurrah to the others! It took a lot to get where you are, and you have so much on your plate! ((HUGS))

Hurray for you Susan. I'm glad something finally went your way.

Saw Jim yesterday and again today with my Mom. We continued decorating his room (interrupted by my abrupt departure when we got the call about Courtney) and now he want his hat collection hung on his wall :o) He seems happy, I brought his headphones for the TV and he uses them all the time. I think it is a quiet environment, but with his sensitivity to noise, He Does Not! So the headphones serve a dual purpose. We had lunch with him today. We brought our own, then went down to the gardens with him. It was a glorious Fall? Day, and Zoe, the resident Labordoodle was out and romping around. We left in time for his afternoon nap in the gorgeous Lazy-boy recliner the staff found for him, all electric, massage, heat, the works. He has his cell phone, but hasn't used it except for when I call him. I bring him a Dunkin Donuts Iced Coffee each time I visit and he enjoys that. He seems content. I feel like someone is tearing my heart out but as long as he is happy, I can deal with it. Thanks again for being the best family a girl could ask for.

Arms around and around,
Susan

PS: The state went to court while I was in the hospital with Courtney and got full legal custody of Diego. He will remain in my care, and I have to back to court with them to get all the legal rights of a foster parent to make decisions on his behalf, school, drs etc. I can then begin adoption procedings for both boys in a year, if Courtney doesn't improve or relapses. She was shocked when I told her there would be no further separating the boys. They are truly bonded brothers now and it would harm them both to be separated. She was not happy. I think she just wants Dee for company. Oh well.

So glad to hear that things are finally coming together for you, Susan. And happy that Jim is settling in very well! It's great about the dog and cats too!

Susan, I haven't posted anything during your trials as others have said it all, but I so admire what you are doing and am amazed at your ability to bounce back. Those boys are blessed to have you..as is your husbnd.

I'm keeping you in my thoughts.

Kathi

Oh, Susan, what else can happen? I am so sorry for all of this for you. This is NOT the way to lose weight, but I surely understand it. All I can say is lots of hugs going out to you. Why won't insurance pay for alternative place to stay? I don't understand that if the house is not habitable. Think I'd be calling an attorney on that one.

I do hope this all straightens out for you. Love, prayers and more hugs.