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Topic Neurology Appointment in AUG Go to previous topic Go to next topic Go to higher level

By Softtouch On 2009.07.24 02:30
I went to a doctor's appointment today and he feels that I have PD. I have read some of the post from all the caregivers. I want to thank each one of you for your compassion.

My concern is that I know this disease will get worse but my husband is 20 years my senior and I now he may not be around in the later stages of this disease. I feel that I may have to get my affairs in order before this gets to bad as for where I should go. I know my children would not be able to take care of me and I have to think of this. I also have Fibromyalgia and I am already on high doses of morphine intervenously. I am so scared and any help you could give me will be greatly appreciated.

Again thank you for all your family members that can no longer express it.

By annwood On 2009.07.24 09:59
Welcome to our forum. Sorry to hear about your diagnosis - it stinks. Please keep in mind that PD is different for everyone and what you read in our posts may not ever apply to you. I commend you; however, for thinking ahead and wanting to get everything in order. The fact that you will have done this will give you great peace of mind. Now is the time to think about what YOU would want and how you want things to be done. I would suggest a family pow wow that allows everyone imput but remember the final decisions are yours. Appoint one individual to have Power of Attorney, sign papers that allow your physicians to share information with selected family members, make your wishes know to family, such as how far you would want to go with life sustaining measures, etc.

Many PD patients live long, productive lives. My husband worked full time as a physician for 14 of the 17 yrs he was diagnosed. We have a friend who is in his 29th yr of PD and is still functioning quite well. There is no way to predict this. There is also a great deal of research going on in the field of PD and perhaps there will be a cure for you or at the very least improved treatment.

As you have read, we have some wonderful PD pts on this forum - I hope you will join that group.

By bandido1 On 2009.07.24 13:37
Welcome! I am one of several patients will comment from time to time as seems appropriate. From my point of view, if you have not already done so, you should be getting some basics supplementing the diagnosis you receive. May I suggest you contact the parkinson's disease foundation@ 1-800-457-6676? Ask for their free video titled "You Are Not Alone". It was created for persons recently diagnosed and should be helpful to you. Good luck! And god bless! Bob C

By lostdaughter On 2009.07.24 13:51

I'm glad you found this site early on. I second all that's been said. Making plans for the future is something we all need to think about, regardless of our current situation. Patient Bob has a theory that those with PD who continue to use their brain are less likely to suffer dementia and that makes sense to me. I think it's important to continue to exercise and challenge the brain so I suggest you keep that in mind.

Best of luck in the coming days. Please keep us posted.

By lurkingforacure On 2009.07.24 17:43
I also welcome you to the forum and ditto to all that has been said. You sound a lot like my husband when he was first dx'd, and as good as it is to plan for the worst, you need to remember to enjoy today.

I do a ton of PD research as it is one of my ways of coping, and there is a lot that is going on in different areas to give hope for more and better treatment options or a cure. Where there used to be only drugs for PD, now there is surgery, with research into stem cells, gene therapy, exercise, and other classes of drugs (I can't spell it but it's something like allosteric, where the drug goes to just the part of the brain where it's needed and only releases as much of the drug as is necessary, this is a completely new class of drugs), and even others. And there are several new bioengineering innovations, including one where they can read the brain activity real time and actually "see" by electrical activity where a seizure is located, etc. All of this research and inventions will further our understanding of PD. As one nurse at a research facility told me when my husband got his dx, "there has never been a better time to have PD". I am very grateful there is as much research going on as there is. It'll never be enough until there's a cure, but at least there is a large worldwide research effort in place.

While you are early in the game, you may want to consider starting an exercise program of the kind being researched at the Cleveland Clinic, it is tandem cycling. Google this and see what you think, talk it over with your doctor, and go from there. My husband has started a cycling class and although he doesn't see the benefits touted by the Cleveland Clinic, he does admit it makes him feel better in general, and that's something. You may want to look into whether it might help you as well. Good luck.

Good luck

By Softtouch On 2009.07.28 16:35
Thank you all for your help and caring hearts. I know it did scare me so much while i read some of the posts ang had gotten myself so upset that I had to walk away from thinking about it. Once I realized it does not progress as fast as I had thought then that feeling of being overwelmed eased up a bit.

I look forward to stopping in and see w things are going Thank You again for ALL YOU HAVE Done aoready,

Have a blessed day.

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