Just on here to learn as much as I can about best treatments, support, etc.
Husband diagnosed with PD: Just on here to... - Cure Parkinson's
Husband diagnosed with PD
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I'm sorry to hear your news. I guess everyone with PD has a book's worth of advice, mine would focus on:
- exercise;
- socialise;
- learn.
So how is your husband doing?
You can take a look at my stack here (and then search the items on Health Unlocked to find more details. Everything on my stack has been discussed on this site): rbd-pd-protocols.blogspot.c...
keeping moving is definitely good advice, but don’t get overawed by the marathon runners, the 100km cyclists and full time gym goers. Don’t underestimate the benefit of walking, stretching and finding activities that keep him active, but importantly, he enjoys. Gardening, diy are good too.
Welcome, Pita. One of the first things you will learn is that Parkinson's is a "snowflake disease." No two cases are exactly alike, symptoms vary widely, the rate of disease progression varies from person to person, the effects of medication and supplements vary considerably. I was diagnosed 4 1/2 years ago. While I am very aware of the long term prognosis, the most surprising aspect of Parkinson's so far is that it's not nearly as bad as I feared. I played a nice round of golf with my wife two days ago and bowled a 233 in my bowling league last night. I encourage you and your husband to continue living your lives as fully as possible. One silver lining is that you really appreciate living and you don't take things for granted. My second bit of advice is to read MBAnderson 's profile. Lots of great advice for the newly diagnosed. Enjoy your lives!
Give us a bit more detail. What is the age, stage, symptoms, medications for your husband? You may get more specific tips from the community. Hang in there it's not all bad news!
This is my message to new arrivals. It is my collected understanding and beliefs since my diagnosis. It has been over ten years since I was formally diagnosed and everyone including my wife and Neurologist think I appear to have beaten expectations. I still drive…. I still walk without help… I still work. I am 78 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. Current meds are directed at three distinct objectives:
- Slowing the progression
- Treating the symptoms (tremors, stiffness)
- Treating depression that many get when they are dealt this hand.
I take Azilect (rasagiline) because it is believed by many 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.
I take Sinemet for symptoms and although it has minimal effect on tremors it has had very positive effects on other symptoms (movement improved and the ‘mask’ is gone).
I believe you have little to lose and a lot of benefit to gain from supplements, so I also take Vitamin B-1 and Vitamin D3. Do they work… maybe. I recommend trying some of these to see if they help you.
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. Also, Blogging here!
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! If you are too anxious or depressed to sleep, you may need Prozac and/or a sleep aid. Get your zzzzzz’s.
6. Take your medication consistently and on time. The timing of medication for Parkinson's is key. It's important to work with your doctor to adjust your treatment schedule accordingly.
7. 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!
Did you start taking Azilect and Sinemet at the same time or started with Azilect first for a period of time?
Azilect first... maybe a year before Sinemet.
thanks.
Did Azilect help you for the first year?
and now?
A bit.... I didn't have the blank PD look. It didn't really help with my tremors.
BUT AGAIN I take it to slow progression.
Thanks. Do you think it slow down your progression?
It has been eight plus years and I am not much worse than i was. I still walk without any help.... I still drive. I am a very active 78-year-old. My wife, friends, cousins.... even my neurologist are amazed.......... So, yes!
That's amazing. Do you know if generic brand of Rasagiline's quality is not as good as Azilect brand?
I have the prescription to buy Azilect but the pharmacist asked if my husband want generic brand as it's about half price of Azilect.
I wasn't sure if the quality is different.
PP Stay with this site, you will learn so much!
Daily Dose for Parkinson’s is a good online exercise site. They also send out weekly “tidbits” via email which are helpful. Search for an Integrative Medical Nurologist-they use natural and Western medicine to treat PD. ..or better said they use “all the tools in the tool box”. A good one is worth their weight in gold! Don’t panic…it is a slow progressing disease so enjoy every day to the fullest. We don’t die from PD, we may just suffer with it for a season…maybe a long season? Only God knows….
Check out symbyxbiome website and infrared laser to the gut. I think it helps a lot and is non invasive, doesnt interfere with meds… stimulates gut and gives energy to cells
Also I believe its not just regular exercise that counts but novelry exercise which is different, highly varied
novelty. Sorry. Bad spelling!