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jeff1946

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About jeff1946

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    Member
  • Birthday 08/26/1946

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  • Gender
    Male
  • Location
    Akron, PA
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    Living History
  1. jeff1946

    Struggling Daughter

    Nice post Linny. Good to see you on here. Jeff
  2. jeff1946

    10 Signs of PD

    My wife was DX last Dec, at age 51....but looking back over the past few years... 1,2,3,5,6,8,9,and 10. Most really are things you don't notice or you chalk up to getting older. But once you have the DX....they really stand out.
  3. jeff1946

    DH/CG not open to learning

    Lin... It's rough...but he will hopefully come around. I have a wife who was diagnosed last December at age 51. Symptoms had been there for at least 5 years prior, but never put it all together. I myself took a deep interest in PD. Started digging up and reading all I could. In fact, I took more interest in learning than what the wife did. It took me awhile to get her talking about it. Best time i found...was at night .. when we retired. Seemed easier for her to talk about it then. Now she is more at ease to sit and talk at anytime about it....even around friends and family. Guess it has more or less become part of our life....which has made it easier on both of us.What is really helping us right now...we joined Team Fox...have have put together a team of friends and family....working to raise money for the Michael J Fox Foundation. Just keep going like you have been....bringing it up on occasion. Tell him new things you learned...tell him how he can help ya. He is probably in a bit of denial right now....but hang in there and give him time....he will come around. :^) Hope this helps... Jeff J
  4. jeff1946

    Newly diagnosed/exercise

    My wife's, age 52, handwriting when diagnosed last Dec...was so small we could barely read it. Since being on sinemet....it is back to normal. The meds actually help with all her symptoms. Jeff J
  5. jeff1946

    The Music Store

    Believe...Brooks and Dunn....beautiful...brings tears to my eyes every time I hear it. I have it as a ring tone on my phone. Jeff J
  6. jeff1946

    questions

    Sue... Mind posting a web address for that site you mentioned? I check out everything I can get my hands on. Thanks Jeff J
  7. jeff1946

    Should I let family know now or wait?

    Hi Pete....welcome! My DW was diagnosed the 1st week of Dec last year....age 51. We decided at the time to only tell close family and very close friends. She also left her boss at work know. But the more we researched PD...and the more we talked... the more open she is becoming with it. I guess it is part of accepting the fact that you have PD. She had a 2nd opinion about 2 weeks ago...and is definitely more open since then. When she was first diagnosed, I sat our two kids down, who are 12 and 18.. had a talk with them about it...and that stress is not good for those with PD. Hope this helps... Jeff J
  8. jeff1946

    Changing viewpoints

    Very well written post....makes a lot of sense....and can help if all take it to heart. Thanks for posting. Jeff J
  9. jeff1946

    The 7 Deadly Emotions of a Caregiver

    Thanks for posting this Rich...very interesting article. Jeff J
  10. jeff1946

    PD and relationships

    Here is a book that helped me understand what my wife is going thru, and will possibly go thru in the future. It is an older book, written in 1992, but very eye opening...and a very easy read. Parkinson's, A Personal Story of Acceptance, by Sandi Gordon. I read it about 4 weeks after my wife was diagnosed. It really helped me understand...and helped with our conversations about PD. Just a thought..... Jeff J
  11. It's the least I can do...as I know if it were me...she'd do the same. :^) Thank you for the nice comment...appreciate it.

  12. I told my wife, since she's 13 years younger than me...that I have to start being healthier...so I can live longer...to help take care of her. :^)

  13. I think if we all work at it...and keep these Foundations funded...we have a good chance of coming up with a cure...or at least a way to stop the progression.

    And yes...your right...we read of lot of things we don't wanna read, but it's better to be prepared in the long haul.

  14. Tonya... Thanks for the nice words, much appreciated. The more I read on the forums, the more I learn...and there is so much to learn.

    Jeff J

  15. jeff1946

    Carb/levo initial usage.

    Jeff, You are a good man by getting involved in this issue early on and getting all the info you can. Well done sir. I will tell you, it may seem overwhelming now, but it is not a death sentence. Great strides are being made daily.. Secondly, welcome to the world of Parkinson's Disease (PD). I have been through this, as almost everyone with PD has. But let's deal with the issue at hand. Sinemet is the "gold standard" for PD. Sinve there is no test for PD, the best marker to tell if someone has PD (as opposed to an issue that similar symptoms) is to give them Sinemet. If the symptoms subside, the patient usually has PD. Sinemet will not take care of all the symptoms. Many of us take what we call a "cocktail" of medications. Sinemet can take care of many symptoms and lessen others, there is really no med out there that will take care of them all. That is why you will see many of us on many different Meds, thus a "cocktail." This is probably the dr trying to find a starting point and severity level. Once that is found, the dr may change Meds. Trust me, there are plenty of them out there. If she has a good response to sinemet, he may try the extended release sinemet. The dr may also try a new medication class call the dopamine agonists (mirapex or requip). There are really 2 tough parts about this disease that are very frustrating for patients and caregivers alike: 1- most PD medication is a "start low and go slow." The Meds are usually started at a very low low dose and increased at very small increments. This is mainly due to the fact that a small change in these Meds can make a big change in the the patients progress. It is not a disease for the impatient. Trust me, I am very impatient. 2- the toughest part, I think, for all involved is the multitude of issues that the disease brings on. This is not to scare you, because everyone is different. There is no cook book answer for everyone. Some of the other issues it can bring on are dystonia (severe muscle spasms), anxiety, depression, joint and muscle rigidity, difficulty swallowing, falling due to lake of stability, daytime drowsiness, insomnia, agitation, ... I'll stop there. The main thing to remember, when she needs to rest, make her rest. Our bodies need rest. All of our dopamine is being used for daily activity and is expended very quickly. Hang in there. There is me and a whole bunch of other people here you can talk to. Look for a local support group in your area, they are a great wealth of information. Lastly, please go to EVERY appointment with her. I bring my wife and she is my truth serum. My answers are always, Fine, going good, and no problems. My dr then looks at by wife as she unscrolls what appears to be the declaration of independence of strts to read. This is a good thing. Outsiders see things we do not. The most important link between her and the dr is you. It is also a great idea to keep a daily journal of happening throughout the day. In the NPF search box type "medication management worksheet" or marks medication management" and you will find a worksheet I made especially for PD patients. It can be downloaded to Microsoft excel to save and update daily or printed off and filled in by hand. I usually recommend saving it on the computer then emailing it a few days before the next appt. This way, no time wasted at the Ppt with the "how are things going" routine. The dr has everything there and cam read it before you come in. Let me know if I can help With anything else. Here is a great quote, " show me a person who is a winner and I will show you a person who has had to face adversity." ~Lou Holt Mark.. Thank you for the reply, I only found it today...as I'm still learning how this whole forum thing works. :^) My wife had a 2nd opinion appointment last Friday....which well very well. he confirmed that it is PD that she has. This new Dr. seems better than the first one, and she feels much more relaxed with him, as do I. He spends a lot more time explaining things, which is great. He now has her on a time released carb/levo at bedtime. This is helping gt her thru the night....and making the mornings a bit better. We'll wait and see how things go now for a few months. She also has started taking the daily doses on an empty stomach...which seem to work a lot better for her. Anyway, that's for the nice reply....it certainly helps understand more. Jeff J
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