Compared to a year ago, are you better, worse or no change? If better, how are you better and what do you attribute it to?

[etterus]

[Hidden]

Somewhat worse than a year earlier. I take no medications so I consider my condition improved compared to the "aggravation" caused by medicine. I read the view of a neurologist, after five years the neurologist may reasonably predict the future progression of the disease.

[quirkyme in reply to Hidden]

it's a struggle to 'keep hope alive' --everyone is an individual and don't let anyone diagnose your future. Make your own future. Do what you need to do to live as well as possible. Find the determination. It's SO hard at times. Try neurorehab, LSVT LOUD and BIG or anything that might help.

[mgmcintyre]

I was diagnosed 15 months ago and am much better due to being on Azilect and exercising daily.

[Susie01]

I am better than a year ago, I have taken Azilect for several years, tried other meds when things got worse that did not work for me. Last summer tremors worsened and added Sinemet to three times daily. At this moment, most people would not notice a tremor though my balance continues to be an issue. I also had a sleep study and started on CPAP for sleep apnea and am taking ambien 5 mg and seroquel 50 mg. to help me fall asleep. I have gone from sleeping 2-3 hrs. of sleep each night to 6-7 hrs. each night. All of this combined has improved my condition.

[quirkyme in reply to Susie01]

PD patients have more problems with sleep apnea. My husband and I (he's he patient) get better, deeper, more REM sleep with the CPAP. Good for you for persevering.

[Susie01 in reply to quirkyme]

There are two studies I know of that are ongoing now in regards to REM sleep and sleep apnea related to PD. I have found that my sleep doctors are quite knowledgeable when it comes to sleep and PD. Best wishes to you and your husband.

[quirkyme in reply to Susie01]

being an RN, you might appreciate this article about how Sleep Apnea doctors who had it, procrastinated in getting treated. Nice article. journals.lww.com/neurologyn...

[Susie01 in reply to quirkyme]

Thanks, will check it out.

[Susie01 in reply to quirkyme]

Read the article, it is interesting. My sleep specialist said my sleep apnea was significant enough that it could have caused my PD, which came first the chicken or the egg? It is interesting that some people have inherently smaller airways, when I have had surgery, they had to use pediatric intubation. Thanks for sharing.

[quirkyme in reply to Susie01]

thanks, I always wondered about the role sleep apnea played in my husband's PD. I suppose we'll never know. Maybe it's multi-causal and genetic.

Both my husband and I have sleep apnea. Mine is worse. I have closed off nasal passages from a nasal injury as a child. It was surgically repaired with flaps, etc. in the 1990s but it's still bad as I age. So the mask is a help for good quality sleep. If sleep apnea can cause PD, why don't I have it?

I used to be an OR nurse and remember adults who had to have a pediatric mask. Thanks reflecting about this with me.

[Hidden in reply to Susie01]

Susie01 There are some simple exercises you can do for balance eg walk 10 paces and do a right turn/ twirl half way. Do 6 and repeat with a left turn. Walk throwing a ball and catching it as you go. Walk throwing a ball then bouncing it as you go. The turn or twirl bit can make you dizzy.

[landman]

Exercise, attitude, hope, faith

[quirkyme]

My husband is much improved. In November his PT saw he was struggling and we asked his neurologist to put him on carbidopa/levodopa. He also takes vesicare for incontinence (after several tests and months of discouraging problems. (This is now 100% better). He just went on a low dose of antidepressant. His executive functioning is greatly improved (put together taxes, goes on the computer more). We enjoy life more and he's more sociable and less anxious. He also goes to the PT twice a week and that's improved his posture and balance. His back pain is gone. His shoulders are loose and he stopped using pain med.

All this is a lot of work but we are seeing that things can get better. The goal is to get him on a plateau, get on a program and keep working the 'program' and enjoy life....for a change. PD is not just one long decline. Patients can recover from some previous losses in functioning. We're leading a PD group and that helps, a lot.

[PatV]

I'm a little better. Diet, attitude, fine tuning meds, spiritual practice, letting go.

[shasha]

I AM DEFINITELY BETTER THAN A YEAR AGO AFTER TAKING LOADS OF MEDS FOR PD - I WAS DXD WITH PSP IN NOV 2012 SO IT WAS DECIDED THAT I CANE OFF ALL MEDS AS THERE IS NOTHING TO BE DONE FOR PSP BUT,SINCE THEN MY NEURO OUT ME ON MODOPAR FOR NECK PAIN AND IN DECEMBER 2013

AMANTADINE WHICH HAS PROVED TO BE VERY EFFECTIVE AS I CAN NOW WALK UNAIDED AROUND THE HOUSE AND FEEL SO MUCH BETTER AND MORE CONFIDENT -- All the best to you and dont ever give in to it - i also haVE PHYSIO 3 TIMES A WEEK WHICH DEF HELPS

[JohnPepper]

Hi Etterus. I know you have had DBS and you have tried almost everything you possibly can to slow down the progression of your Pd. but the sad truth of the matter is that no medication has been proven to slow down the progression of Pd and DBS does not do that either.

You may not believe that fast walking has been proven to improve many of the symptoms of Pd, but it is true. In my case, I started doing the fast walking in 1994, when my symptoms were at their worst. By 2002 I had been able to come off any Pd medication and have been off any Pd medication since then. I have lived a normal life since 2002 and am now 81 years old and am very active.

I wrote a book about my Pd experience in 2003, when I had been the National President of our Parkinson's Association, I gave 3 neurologists a copy of the book for comment before I published it. They never came back to me. Within a few months of that I had been asked to resign from PASA and I was accused of claiming to be cured, claiming to be cured without the use of medication and of using the Association to sell my book. All of these accusations were false, but they were made at an AGM of the Association where a large number of Pd patients and Care-givers were present. Who do you think the audience believed, me or the neurologists?

From this you will gather that my good news was not well-received by the medical profession. I don't blame them, because this has not happened before and in their training they were taught that there IS NO CURE FOR PD! However, if it had been I who read that book and I was a doctor then I would have gone into it further before attacking it.

I have met an enormous amount of opposition to my book and have been accused of many things, but I still soldier on, when there are more and more studies being carried out on the effect of exeercise on the progression of Pd. They all say that Exercise DOES CAUSE THE BRAIN TO GET BETTER!.

It is never too late to start doing exercise. If you would like to learn more about all this then go to my website - reverseparkinsons.net and read all about it.

Don't tell yourself it is too late, it never is!

Good luck!

John Pepper