Wanted to say hello


#1
Hi Everyone, I've been reading here for several weeks and wanted to say hello. Am 47 yr old mom and wife living in Maryland, USA. Diagnosed correctly with YOPD in May, but tremor began about 8 yrs ago. MDS doc asked what I wanted to do and decided not to start meds yet. When I exercise strenuously my symptoms stay manageable. Am curious if anyone taking Azilect feels that it is slowing progression of PD. Hesitant to take any meds right now as I feel good generally and quality of life good, symptoms are just frustrating at times. Besides which am a big scaredy cat terrified of side effects.

Today was interesting here. Daughter looked confused and bit scared until I said it's an earthquake. Then she got a big grin and said, "Cool!". Whole house shook and water in pool sloshing about. Sister works in D.C. She said the 8th floor she was on felt like being on a small trampoline. Use to live in California and for a minute it was deja vu all over again.

Thanks for the wonderful discussions on here, especially about alternative therapies and tips for daily living. Best wishes, Lin2

#2
Hi Lin2 and welcome to the forum. It is great to hear that you are coping so well without medication. I'm so pleased you have decided to join us, I know we do have people of a similar age to you as well as some of a more mature age like me!

The earthquake sounds a bit scary, everyone OK?

#3
Hello and welcome LIN 2, good to see another new name join the ranks. We are so lucky in the British Isles not to be bothered by earthquakes, I would be scared stiff.

Hope you don't get to many of them.

Radz x

#4
Hello Lin2, Nice to meet you. Welcome to the forum. I am at the same stage as you. I was dx 6 months ago, but I've decided to try and go as long as poss without meds, and for all the same reasons as you. There are a few of us the forum at this stage. I'm just about to up my exercise regime on the advice of my physiotherapist, who says it can make a big difference to the progression of the disease. When you say "strenuous" exercise, what does that include? I hope you don't mind me asking, as it obviously is beneficial to you.
Kind regards, Carole.

#5
Carole, I tried to post a reply to your exercise question but don't see it on here. It was a little lengthy so I'm going to wait and see if it appears today. Will answer you tomorrow if no luck. Is it normal for replies tro not post immediately? Take care, Lin2

#6
HI Lin2 welcome to our forum, sounds a bit scary the earth quake .
You sound a very positve person & with PD you need to be, I am nearly old enough to be your mum but still go to tai- chi swim & walk in the country , I was diagnosed 3yrs ago ,refused any medication until18mths ago when I started on azilect I think it has improved my dexterity & cognitive movements. but it's may not be for everyone.:rolling_eyes: take care ,marie

#7
Hi Pebbles, Radz x, and Carole,
Thank you for your warm welcome, it is appreciated. Tried to post this reply to question about exercise earlier, but seems to have disappeared. Hope this one works better.

Last October joined the gym to get in shape. I was dx'ed in May and based on my doc's recommendation, and Dr. Lisa Shulman's exercise study, upped my routine to hour walk and half hour each strength and stretching exercises at least 5 days week. When starting out on my walk my right leg would feel like jello and would have to think heel, roll foot down, push off from toes. About ten to fifteen minutes into walk would realize that didn't have to think that anymore because the muscles had remembered that they were muscles. They remembered what their job was and how to do it. Sometimes would have to stretch out curled toes on right foot a number of times. One time gave up stopping every 15 seconds and jogged the rest of way home. Jogging stopped the cramping. Weird.

Beginning of July started going to a new hour long boot camp class at the gym four days week. Basically do exercises for 50 seconds then rest 10 to 30 seconds depending on the day and how much the coach wants to torture us. Do 2 to 3 circuits with couple minutes jog at end of each circuit. The exercises vary daily, but include planks, walking on hands/feet sideways in between push ups, burpees, mountain climbers, various dumb bell exercises, sprints, oblique exercises, lay down for leg lifts or scissor kicks while holding weighted ball, kettle bell swings, weighted squats, jumps onto low step, etc...Many days have thought there was no way to keep going, but would. Usually use lighter weights than others and often not as many reps. Will jog at 4.5 mph not 7 mph like others. Drenched in sweat like everyone else though. Then something amazing happened, by the end of July my PD symptoms got better. The almost constant internal tremor of left thigh disappeared. Most of internal facial tremors gone. Remaining facial and lower right leg internal tremors greatly shrunk in area affected and frequency. When I start to walk around neighborhood right leg doesn't feel like jello and don't have to think about foot placement. Sleep better and haven't had to take afternoon naps.

Doesn't fix everything. Still have tremors, can't write, foot catches on treadmill, drool if not careful, right nasal passage constantly clogged, cog wheel rigidity, etc.... When did less strenuous exercise while on vacation my symptoms worsened. It's like taking medicine, you have to take the right dosage consistently to keep symptoms at bay. Only side effects, though, are feeling healthy and like you are fighting back.Notice that it took most of year for me to build up to this level of exercise, didn't just jump into it. Obviously this not for everyone, but movement of some kind beneficial at every level of ability.

Sorry for too much info. Hope I didn't overwhelm you too horribly. Best wishes, Lin2

#8
Hi Marie,
Thank you for the kind words. Glad to hear that Azilect helping you. Am interested in learning about meds as much as possible before have to take them. Know they'll be part of my life one day. Always encouraging to hear people doing activities they enjoy and that are good for them. Heard tai chi good for balance, will have to try it. Thanks again for the welcome, Lin2

#9
Wow Lin2, I feel quite worn out just reading about your regime. I'm pleased if I can walk the dog but then I am in the more mature ranks than you, in fact my daughter is your age. Keep it up as it seems to work

#10
hello

#11
Hi Dadio, what's up?

#12
Hi Lin2,

Welcome to the forum! No need to apologise about your post. I found it very informative and further proof that exercise does help fight PD symptoms. I have a few papers on this and your post puts a human side to this.

I don't have PD (my mum does) but I sure feel as if I have done some strenuous exercise by reading what you do :exclamation:

Take a look at this web-site. http://curezone.com/forums/am.asp?i=1310785
You might like the alternative meds part as well :sunglasses:

Obviously you have to be wary of the rather loose language (words such as cure make my defence mechanisms take flight, but fascinate me none-the-less :stuck_out_tongue: ) etc.

I fully understand where you are coming from when you mention that you body remembers repetitive actions after a while. One paper I read performed an experiment with mice being injected with a liquid to bring on Parkinsonian features. Then some had their affected side tied so they could not use it. When they were untied they fell well behind in the motor abilities (even after several weeks of "catch-up") from those who were not tied in the first place. Of course the ones who were untied never had to re-learn how to move their bodies ... but still I think there is something there.

Best wishes to you and your family,
rico

#13
Hi Rico,

Thanks for the link. The best that I've felt is after I started doing exercises basically the way that's described in the article. Saw the biggest improvement in strength, aerobic ability and endurance. Also, experienced greatest decrease in PD symptoms. When went on vacation didn't do the interval training, just regular treadmill and strength training. Didn't do stretches at all. As result felt everything worsened, including self-confidence. Will have to read up more on the author's theory. Don't believe exercise a cure, but do believe it slows progression, especially over a decade or more. Know without doubt it helps me maintain good quality of life physically and mentally. Best to you and your family, Lin2

#14
Hi Dadio! Lin2

#15
I am confused. Most days it takes me until mid-day to get washed & dressed. Sometimes I just don't bother.Not because I don't want to, but because I simply can't. So how am I supposed to do strenuous exercise? We all know the benefits of fresh air, good food & exercise, but what if you just can't do it? I tried the physio's exercises & fell. I had a healthy stir fry meal & was sick. Now I cannot sleep

#16
animal experimentation with a view to understanding PD : a rat will "freeze" in the face of a headlight.
Is this fear?
Do we extrapolate to lack of dopamine?
I am not a rat

#17
With you all the way AB (2nd last post) I get told I'm slow or lazy if I don't get dressed for the day, don't take dogs out etc.. but when I'm sick I'm asked if I'm ok,I have slowed down a bit but no need for others to say so,, is it because lots of symptoms for pwp isn't actually on show the same as e.g. sling on arm!!!!

I'm sorry if this is on wrong thread.

#18
Agree with you nene. I have tried a couple of times to get mum to do some strenuous exercise but although the mind is willing, the flesh is weak. She can walk around the yard, and goes better pushing a lawnmower. And I've tried when she is "on" and a little bit after taking her madopar.

I can see that it helps, if only you can get to the point of exericee. Much easier said than done unf.

Problem with mum is that most people tell her to take it easy and that she is sick. On the extreme to you.

Best wishes,
rico

#19
44 single female recently diagnosed and scared of what future holds....going to start neupro patch in a bit cos symptoms not stabilised yet,,,frustration and lack of sleep are not helping my state of mind......is this ever going to change,i hope so

#20
Good morning Buzzicles and welcome to the forum. I'm afraid lack of sleep is one factor that a lot of us have in common that is why you will always find someone to chat to no matter what time you post.

The forum is a great place for support and advice and there is generally someone who can answer any questions you may have.

As to will it ever change, who can tell. I have been dx for 18 months and things change on an almost daily and can be hourly basis. I just try to go along with whatever and however I feel at the time. I am lucky to have great family support around me. You mention that you are single but do you have any family/friends who you can call on?

Once again welcome and I hope to meet you around, maybe in rhe social site chatroom