Hi everybody! Good Morning here, if you are in the States.
I just wanted to let y'all know about a couple of updates with my sister. One, I posted before about my concern with a new medication that was prescribed by her primary doctor, Nuedexta. Well, after talking with her psychiatrist and her new neurologist, this is a pretty good drug to help with unexpected, uncontrollable crying or laughing. It is usually used to treat Psuedobulbar Affect or PBA. I had my doubts at first, but her neurologist said it takes about 3 to 4 weeks to see any improvement, but after just a couple of weeks I have seen a definite improvement. Before, S. and I were having a very difficult time dealing with these outbursts, me mostly. So bad, that I had to take some time off and remove myself from the situation. But, things are going much more smoothly now. Thank God.
Now, the other Great News. I think we finally found the neurologist that I have been looking for, for such a long time. After one local doctor, 3 long distance doctors( over 200 miles away), we finally found someone who actually "Cares" and is willing to help with the various symptoms that come up with this dreadful disease. I left his office and I wanted to do the "Happy Dance" all the way to the car. I am soooo thrilled and relieved to find a doctor who gives a damn about his patients. He took his time with her and asked tons of questions and proceeded to let us know of the various things that could come up(which I knew about from all of you) and how he could help. I almost fell out of my chair.
Anyway, that's my good news for a change, but things are "normal" because S. fell not only once the next day but twice and she took me down with her on the second one. Don't worry, we are both fine. Just another couple of bruises to show.
Take care everyone and lots of ((((((Hugs))))))) to you all!
Gracie girl
btw- my real name is Becky, not Gracie. Gracie is my adorable chihuahua/terrier mix baby. She lets me cry on her furry shoulders. Bless her.
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Gracie_Girl
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Becky glad you have found a doctor, who is interested in helping you. We have the best doctor ever, he is really helpful and there is another doctor there who is just as lovely, professor Morris and doctor Lamb, I can't praise them enough, we are truly blessed . Yvonne xxxxxx
Hey Gracie, thank you for letting Becky use your name....it's so nice to have a friend like you
Hey Becky CONGRATULATIONS ON FINDING A DOCTOR WHO CARES!!!!
I hope that he will find all sorts of wonderful ways to help your sister with her symptoms...I reckon he has some experience w PSP? If not , he's gonna ! Well if you get PT for your sister , ask them how to help your sister fall....how to help yourself when she falls ....how to help her stand back up and naturally how to stay up but since you have been around this illness for quite some time you probably know how to help in the falls and the getting back up1
Anyway I am very happy for you , praise God for good news....
So glad you found the right doctor. It is so good to have him confirm that you are on the right track . I will do a happy dance with you. Your sister is lucky to have you . Hugs.
Hi Becky and Gracie girl. So pleased things are more positive for you and you have found a good doctor, it makes a lot of difference, not to the eventual outcome but how we can deal with all the ups and downs along the way.
Great news about a good neurologist. I live in Louisville, KY and I was always happy with ours. Most visits lasted between 45 and 60 minutes. But getting an appointment could be a challenge, especially for new patients. I always got her scheduled every 3 months, once she was in her 4th or 5th year of PSP.
And great news about Nuedexta. I hear them advertise it on TV frequently. My wife never had those laughing/crying outbursts all the time. Early in the disease, she was a bit compulsive and would speak her mind more freely than her old self. And throughout the disease, she was compulsive in her actions by always wanting to get up on her own, which usually led to a fall.
My sister, before diagnosis, had an extreme personality change. She was raging mad all the time, anything would set her off and once she hit my dad. All my family was at their wit's end trying to figure out what the hell was wrong with her. It was extremely scary at the time. She's not so bad any more. She still has her infuriating spells of stubbornness, which would inevitably get her in trouble. And like your wife, her impulsive behavior always ends up in a fall. I still marvel at how she hasn't broken a bone yet. And she is sooooo quiet. If I try to get some household chore done and I don't make her promise not to get up, she will appear out of nowhere and she'll be up and looking for something or wants to get something. There have been several falls from those "little trips". And she's constantly wanting to get up for whatever reason, she never stays seated. It's so frustrating to be constantly by her side anticipating her every move. And in a split second she could be down on the floor, whether I am standing right by her side or not. I go outside and let out a scream a lot. Lol! If it hadn't been for this site and reading all of the posts, I never would have figured out her raging anger was an early symptom of PSP. I'm sooo grateful I found this site and that everybody is so helpful and understanding. It's been a real blessing.
Glad you found a good neuro.......we are on the process of looking for one and have thought about UAB although about a 4 hr drive. We like our neuro but has spent very little time with us on the last 2 visits. ....so getting discouraged. We are relocating to the Southern AL area so any recommendations are welcome.
Hi blackhill! I'm in Northern Alabama in Huntsville. We did UAB too. It's 2 hours for us to travel. We made the trip 3 or 4 times every 6 months and it became clear he wasn't going to take much interest in us. I've heard that there a good neuro there, but we didn't get him. I hate to speak ill of someone, but, sometimes you just gotta do what you gotta do. We had Dr. Harrison Walker. Yes, he was the one that came close to diagnosing her, but he never would commit to what it was. With him, it was going to be a wait and see every 6 months. Well, that's a long drive for nothing, when I could get that here. Now, the one we've heard good things about is Dr. David Standaert. I think he's the head of the Movement Disorders Clinic. There are several others but I haven't heard anything about them. It's been my feeling through all of my searching, that it doesn't hurt to at least see if they have anything to offer. But, you do find a lot of frogs along the way. If you want to get into the research programs, I guess that's the place to go. If you go to the Michael J. Fox Parkinson's website, they now include PSP as a disease to study with PD. They post the research clinical trials on their site . Check it out. I don't know how close you are to Gainesville, FL, but I did take my sister down there, because I had done some research and they have an excellent Movement Disorders Clinic at Shands Hospital. We didn't get to choose the doctor, but we got Dr. Armstrong and she was extremely helpful and informative. While we were there, we saw all the PT areas and they did assessments and gave us several helpful tools to use in the future. What we decided was that they were going to send their recommendations to my sister's primary care doctor and he could do the referrals we needed for PT and how to approach her care. We can't continue the long distance care, but they reassured me that there was doctors and programs out there that cared for their patients. Also, then I'll shut up, check out the website CUREPSP.ORG, if you haven't already. I found Dr. McFarland under webinars but his in no longer listed. There are several good one's to look at. If you want any other information, just pm me and give you all I know which really isn't that much.
That's great news Becky! It's really important to have a Nuro that takes time to listen and offer some kind of assistance to the ever changing symptoms of this horrid disease.Your sister is truly lucky to have you by her side.
Gracie a.k.a Becky! Our psychiatrist prescribed the same drug and it really helped as well. Neurologist kept pushing Seratraline but it just seemed to make him more agitated. Am so glad you finally scored a caring knowledgable Neuro. Little piece of advice. Try to get perscriptions from your doctor for anything you can especially big ticket items. That way at least some things you won't have to cover out of pocket. Never too early to think about things like a walker and transport chair. Just know Medicare will only cover one of each thing so chose wisely. There is a weighted walker called a U- step that is worth it's weight in gold. I know it seems morbid to think about these things but the time to is before you actually need them so you have them when the time comes. There is a special cras helmet you can get if falls become more frequent but good luck getting her to wear one!
Thank you, Jayne. So far, it has been such a relief to find a neuro close to home too. Luckily, about 8 months ago, a PT recommended getting a U-Step. I did a lot of research and was stunned at how much they were. So, being a thrifty person, out of curiosity I checked out EBay and after patiently watching, I found one. The gentleman made it sound like it was a used walker and he had it priced as one. I managed to get it for $300.00. I felt pretty good about my find, but when it arrived, it was still in the box, never had been unpacked. Amazing! Of course, it took me a couple of months to get her to use it.
A Big Thank you for the idea of a helmet. I hadn't thought of that at all. Believe me, it is something I am going to get her to wear. It will give me some peace of mind.
Unfortunately, early on when she had to start using a walker, she panicked and had her doctor write a prescription to give to Medicare for a motorized chair. Her motor skills were compromised and she's never been able to steer it, even outdoors in the wide open spaces. So, it sits in the living room gathering dust. Eventually, I'll propose to her to sell it or donate it. That means we'll pay out of pocket for a wheelchair. Oh, well.
The things we are forced to think about may seem morbid to others, but, for me, sometimes the decision to be made is like choosing between toast or biscuits. Difficult decisions or thoughts aren't so difficult any more. It's a matter of self preservation.
Thank you again for sharing your knowledge and experience. I have learned so much on this site, as well as gaining helpful friends.
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