How can this be happening? During the past 10 or so years, I have become increasingly frustrated at my inability to communicate effectively with everyone. The volume of my speech and my articulation suffered. I actually took the speech therapy course, LOUD, at St. Joseph's Hospital in Atlanta, but, there was not a lot of carry over for me- laziness on my part. I worked harder to be understood by friends, but did not work when I talked to Nancy. My speech was slurred and not loud enough. Therefore, everything I said was followed by "what?" which was tiresome for both of us and led to more frustration on both our parts.
This past summer at an appointment with my neurologist, he mentioned the program BIG and how successful it was for Parkinson's patients. Nancy called and they said that they probably would not have an opening until December. However, they called a few weeks ago and I've begun the program.
First, I have to say that this freaked me out. I'm very cognizant of my difficulties walking, speaking, thinking. I have fallen more often than I would like to admit. I am sometimes reluctant to stand close to another person for fear that I will fall and take them down with me. I was very nervous about attending the class. I've undergone invasive DBS surgery and was less nervous going through that than I was about this. After the first evaluation which included a few exercises, I was ready to quit because I felt so inferior. Our 19 year old granddaughter said to me, "why do you think you're special? They see hundreds of patients, probably some worse off than you. They take you where you are and try to help you. You have to be willing to work." That did it. I bought in hook, line, and sinker.
It's amazing how my psychological health influences my life. DUH! HA! I have already learned in two sessions how to get into bed and out of bed without needing Nancy to help. I'm also much better in getting out of chairs. I'm practicing the exercises every day and I believe that at the end of the sessions, 4 weeks with 4 days a week, I'll be much better. I'm actually speaking louder also. Speaking louder helps my articulation.
Maybe, you can teach an old dog a few new tricks.
I've begun taking RYTARY instead of the 25/100 carbidopa/levadopa I took so long. It has evened out the on/off time I felt with my old regimen.
In short, I have a lot to be thankful for. We have talked with and met so many people since all the hoopla following the introduction of Tasigna October a year ago.. I'm happy to say that there are more people every day who get their neurologists to prescribe Tasigna. Some are seeing huge changes and some are not. Life is a crap shoot! The Canadian pharmacies who are making money off of all of us are very happy. HA!
We hope you all have wonderful Thanksgivings with those you love and that life is good for you now and in the future. Life is improving at the Hoffman's.
The time release version of levodopa makes all the difference- that is all I need. It is a medical error to start patients off on the immediate release version.
ReplyDeleteSo glad you have found a program that is helping!
Dear Alan: I have to say that this last post of yours leaves me quite confused. Specifically, regards the necessity for you taking Rytary in place of 25/100 Sinemet and attending BIG and LOUD classes, in spite of your continuing use of tasigna (I assume you are still taking 150mg of Tasigna everyday). In spite of your use of Tasigna , are you having to change over to Rytary and take these classes to continue your progress? Or put another way, are you finding that Tasigna is not the answer to all your Parkinsonian symptoms?
ReplyDeletePlease answer me as soon as possible as I am continuing to evaluate the efficacy of taking Tasigna.
All my best to you and your family. Ron
Thanks for your recent Nov post Alan. It is so important for all of us to keep communicating on all of the different aspects of care that is available to treat PD. As far as Nilotinib (Tasigna) is concerned I think that when all of the clinical studies are completed and the evidence is in that were going to find that nilotinib is going to be beneficial in slowing the progress of the disease down, the clinical evidence this far seems quite strong. Those who will benefit the most will be the PD patients that are in the early stages of PD. But, slowing down the process of this progressive disease at any stage sounds good for PD patients. So Alan please feel free to tell us periodically how you are responding to your dosage of 150 mg. of Nilotinib, and if you are continuing to take it. Parkinson's seems to affect everyone differently.
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