Newbie saying hello

[riverBirch]

Hello everyone--my husband has been diagnosed with Parkinsonism, and we are beginning this new phase of life, looking for information and community.

[brauncs]

Sorry to hear about your husband's diagnosis. You will find a wealth of info about dealing with Parkinson's here, from all over the world.

Good Luck, Craig

[riverBirch in reply to brauncs]

Thank you! 🙂

[Bolt_Upright]

Welcome! You might enjoy joining our Sunday Zoom call MBAnderson is so nice to host. They are every Sunday and you will meet lots of nice knowledgeable people. You WILL be welcomed! Sundays, Noon Eastern!

us02web.zoom.us/j/833522248...

Sundays, 11 am – 12 PM-ish, US CDT.

[riverBirch in reply to Bolt_Upright]

Thank you for letting us know! Will join soon!

[MellowYellowcup]

u have come to a helpful, encouraging & knowledge filled site

Welcome

[riverBirch in reply to MellowYellowcup]

Thank you! I am so grateful for the kindness shown.

[DEAT]

Welcome. We don't want to be in this club. But everyone is lovely All the best in your journey

[riverBirch in reply to DEAT]

Thank you for your welcome!

[richardo123]

entertaining my 20th year . I have been blessed on this journey by faith and hope . Started as young onset at age 44 . Turning 65 soon. Lots or tons of support from my wife. 3 words that are important to me are never give up . I am in Nova Scotia Canada. All meds are prescribed by my physician. I never do anything without consulting her . Headed out to a great blessed day . I suggest all who are reading this will try the same .

[DogsWoode in reply to richardo123]

Lovely! Will do so. Hailing from rural Ontario Canada. And appreciating this wonderful informed compassionate interesting vital website as much as the rest of you. Cheers all.

[Graciedog123 in reply to richardo123]

Good morning thank you for all the encouraging words you have shared, would you mind sharing your medication list? I would love to see how the dose of C/L has helped if you do indeed take it?, I’ve been avoiding it, but stiffness is a real thing And tremors are a real thing for me grateful for any advice you have. I was diagnosed with PD ~ 10 years ago. I’ve been good at keeping up the exercise but I’m getting a little weary ….my knee knees hurt my back hurts , et cetera …..grateful for any advice..

[riverBirch in reply to richardo123]

Thank you for your inspiration!

[Charaf1959]

Bienvenue au site Web le plus utile et le plus enrichissant au monde sur la maladie de. Parkinson

[TheGimba]

15 years in; advice for a newbie. Don't underestimate the power of diet and exercise for PD and all meds have side effects, a risk benefit analysis is important, especially for some of the meds they prescribe early on. Agonists can cause behavior issues such as uncontrolled shopping, gambling, eating and sexual urges...caution. If I was to do it again, I would try nicotine gum in a heart beat rather than agonists which almost destroyed our family.

[riverBirch in reply to TheGimba]

Thank you for the advice!

[popo1]

this site is a wonderful resource. exercise, even light, is soooo important-get to loving it. otherwise, do not blindly follow anyone's advice, develop your skepticism and research skills. believe in yourself and your own powers of thinking and healing. best of luck going forward.

[riverBirch in reply to popo1]

Thank you. I appreciate your advice. There is so much to consider.

[Teetogreen]

hi, I’m Nan, and my husband was diagnosed in April of last year. I’m still lost! I just keep reading and reading.

[riverBirch in reply to Teetogreen]

Hi Nan--I can tell this is going to be a journey. We are grateful for information to consider and good people.

[4000Nights]

This is my message to new arrivals. It is my collected understanding and beliefs since my diagnosis. It has been over thirteen years since I was formally diagnosed and everyone including my wife and Neurologist think I have beaten expectations. I still drive…. I still walk without help… I still work. I am 81 and enjoying life… It is important to note that PD is like snowflakes… no two occurrences are exactly alike but there are things to try that work for others that may very well work for you...

1. PD Meds are directed at two distinct objectives:

- Slowing the progression

- Treating the symptoms (tremors, stiffness)

I take Azilect (rasagiline) because it is believed by many (clearly not all) to slow progression. A worldwide, multi- institutional clinical trial of rasagiline ’s potential for neuroprotection was published in 2008 and follow-up data from the original studies has also been examined closely. These results suggest that the use of rasagiline earlier in PD may offer the greatest long-term advantage and modify the symptomatology over time. Rasagiline works best if taken early. I highly recommend it. Again, thirteen years and minimal progression.

I also take Carbidopa/levodopa for symptoms and although it has minimal effect on my tremors it has had very positive effects on other symptoms (movement improved and the ‘mask’ is gone).

2. Movement - Exercise is the best treatment for slowing progression, e.g., (shadow boxing, dancing around the house, walking or just getting up from my PC at least once every half hour. Tai Chi (or just moving exaggerated slowness while shifting weight from foot to foot) sometimes with eyes closed preferably in the middle of a big room. Balancing on one foot than the other. Bottom line: you got to move it… move it! You got to move it… move it! Develop an exercise program that works for you and do a little more each week.

3. When you are not moving, exercise your mind - for me, Sudoku and Cryptogram – do them every day.

4. Foods you eat may (some will most likely) exacerbate your condition. I found carbs and gluten make my condition worse. I even switched to a glutton free vodka. It has helped me. I suggest keeping a food log as part of a daily diary.

5. Get a good night sleep and take a nap… PD drains you. You need to recharge! Get your zzzzzz’s.

6. Drink a lot of water regularly through the day. As you age you lose your sense of thirst but not your need especially with meds.

Hope some of this helps!

[riverBirch in reply to 4000Nights]

Thank you for this concise information! All do helpful. Grateful.

[puretone]

Take maximum advantage of the so-called honeymoon period. For instance, if you have travel plans do them sooner rather than later, finances permitting of course!