Hello all and what and informational forum. Is this the leading one on the web? Well my dad was dx with PD about 2 years ago. He is 65 years old. He is in great shape and has always been. He actually feels a little betrayed that he has this and is in a mild depression. He has done 100's of triathlons and marathons in his earlier years( and finished in top 10%) and always was a very very healthy eater. so like I said he does not understand why he got is but knows that his healthy lifestyle does not and did not prevent it...but maybe prevented it's onset from happening earlier. He lives in FL and I am in NY but I am now determined to help him fight this the best I can. He has just had such a bad attitude about this since he got this. He has lost interest in life....he was always the life of the party, hang out with friends etc. Now his mind state is blah.
His major symptoms are tremors in his left arm and leg. He also says he feels like a sizzling in his body sometimes. He is taking senimet I think 25/100 3 times a day. He was taking some other meds a while ago but said they did not work. I'm not sure he gave it enough of a chance though???? I think he has been on the sine met for about 2 months now and does not really notice a difference. How long should it take to see improvement? Can anyone make some suggestions on helping his tremors and this is really affecting him mentally and physically. He can still hold cups, papers etc but he just shakes a lot sometimes. Thanks very very much!!! He takes vitamins like he has his ext ire life, fish oils, coq10 .. About 6 a day.

Good Morning Horsegoer. Sorry to read this. And let me tell you that I can relate.

I too was incredibly physically active and competitive until one day, while I was training for as marathon, I noticed my left foot dragging. Several neurologists later, I was diagnosed with Young Onset PD. Like your father, I slid into a state of apathy. It is common with PD.

Has he been seen by a Movement Disorder Specialist who works exclusively or primarily with PD patients? Because until I was able to get into a Parkinson's Center of Excellence I worked with a number of neurologists and tried a variety of PD medications without much sucess. It took me about a year before I found an MDS with whom I could relate and who worked with me to establish a medication regime that worked. That relationship is important because what works today might not work tomorrow and we had to do a lot of fine-tuning.

It is fantastic that you are there to help -- even at a distance -- because there is a lot of information available to help optimize quality of life. But it is up to the person with PD to take charge and do it. This means being aware of the research, including (in your father's case) the research on forced cadence exercise. There is a thread here that your father should find interesting. There is also information on meditation, nutrition, sleep, etc.

Back to the exercise part: The forced cadence research came out of observations that some people with Parkinson's who used tandem bicycles seemed to show some symptomatic improvements. That has borne out in the studies. If your father can find someone to partner with him, he can continue to compete in events using a tandem. I do.

Bottom line is that he shouldn't give up. PD is not a death sentence. Inconvenient, yes. Annoying, yes. But there are work-arounds. Ask. Read. And keep asking and reading.

Best of luck,

Tremorgrrrl

Hello Horsegoer,

The Sinemet might not be working if you dad is stressed, depressed, losing sleep.
I know when I am very stressed or did not get the rest/sleep I require, I can bank on my carb/levo (Sinemet) not working worth a flip.
Maybe this could be the problem.

Also, falling into depression is so dangerous for us PWP's. He needs help before he falls too deep. I fell deep and it was so hard to dig my way out. But, I did.

Your dad is going through a time of mourning, I'm sure. It's natural, but if he shows signs of not functioning and withdrawing, he needs help, maybe an anti-depressant prescribed by a movement disorder specialist.

My thoughts are with you and your dad,
Tonya

Can take a while to adjust to meds, and to get them just right, and even then they can be tricky. Something to watch out for is protein foods, they can stop meds from working well, and it is best therefore to eat them in the evening.

When I first went on sinemet I had quite a lot of drowsiness at unexpected times, and didn't feel myself except for short periods when the meds really kicked in. This evened out after a while.

It is important to have a good attitude to PD, and to not let it get you down.
Finding out as much as you can helps too, as there are some complex issues to deal with, especially when you are coming fresh to it with meds, and learning how to manage them and yourself so that you can get on with life.

There is as yet no indication of the causes of PD, though there are educated and otherwise guesses - it does not seem to matter how well you have looked after yourself, Pd can still get you.......... so there is little sense in feeling as though you have not done the right things......

Your father is lucky to have you looking out for him, best wishes with helping him come to terms with PD, and best wishes to him....

Lindy

Thanks sooooo much term,tonya,lyndy. I really appreciate it. My dad said he went to a movement specialist. I asked him quick when I was telling him about all your responses. I am going to ask him about it more tomorrow. Thanks again and all the best to all of you.. Hope we will be talking often.

My extremely active husband (football, wrestling, baseball coach before retiring) is in his 13th year of DX. He sounds like your Dad...a runner, fantastic sense of humor, life of the party, great about eating the right foods. With the exception of no longer running, he still does the same things. We definitely believe the key to this is EXERCISE! He exercises 6 days a week; 2 miles each day on the treadmill, 3 miles on the recumbant bike, and 3 days doing a routine on the Bowflex. If he misses a day, it's very obvious. He has less energy, he's not as alert, and mentally, he seems slower. He is 72 now, and I am wondering how he will handle this disease when he can no longer exercise like he does now, but I know he will find a way. (However, even the exercising has no effect on the tremor. Supposedly, tremor is one of the things that is hardest to control, even with medication.) Try to convince your Dad that dealing with Parkinsons is like having a competition. Parkinsons is the marathon, and the only thing he should want to do is win!

His tremors is what really bothers him. Has there been a consensus about any natural/herbal stuff that has shown to help a good amount of people? THanks.

Hi there,

I am on this site for my Dad too. He was dx two years ago. The doctor does not want to prescribe medication yet. he takes coq10, reservatrol with omega, turmeric, alpha lipoic acid. The tremor is what really bothers him. Is there anything anyone has taken that helps tremor?

She also has been on thyroid meds for 12 years and recently told she has been over-medicated by it and told to come off of it for good. That she should never have been on them to begin with.

We always thought she was mis-diagnosed and now she has come off of both the thyroid and Prolopa meds completely. She is now dealing with a healing crisis where my parents and other sister need to care for her totally (as if she is an infant) since she is unable to look after herself at all.

I am asking if anyone out there has ever tried to come off of these meds? My sister has been coming off of them slowly for months now, with alternative medicine assistance along the way. The True Hope supplements are helping some; she hasn't been taking them long enough to make a difference yet.

Any assistance with what to expect coming off of Prolopa over the long-term would be appreciated.

The sinemet works for me for about an hour, a little more. It helps loosen up the stiffness, rigidity. I have never heard of it helping for tremor. It's kinda like wd40 for the nerves, it frees up the stiffness but with the tremor things are already free, they're rattling away! The only thing that helps the tremor that I know for sure is DBS. It is brain surgery that uses a tiny electrode inserted in the brain to send out signals disrupting the extra electrical activity causing the tremors. It has pretty consistent results for tremors, any of the videos of PWP who have had DBS due to tremor have remarkable results.

Your father should be seen at a Center Excellence in Parkinsons. They have MDS that see Parkinson's patients all day. I did and I am so thankful for their help. They will fully evaluate him, optimize his meds, etc. I don't know where your father lives in Florida but there is one at Shands in Gainesville, USF in Tampa and Univ. of Miami in well you know.. hope this helps.