I have had Parkinsons for a year, take the usual meds and get along ok. Has any one had knee
re placement that has pd. Went to one dr and was told i had a death sentence since diagnosis of pd, got up walked out. Also does anyone have info on holistic practices and pd. Everyone have a good weekend and a productive life. Any help or assistance would be greatly appreciated, thank you all.
That was a sorry excuse for a doctor! Hope you don't see him again. I have had 12 years since my dx and I still can say the same as you. I get along ok!
Calls himself a doctor he should be thoroughly ashamed of himself and certainly should not be speaking to Patients like that I think I might be tempted to call him something they would not publish on here.
HI AND WELOME TO THE SITE
I do not have PARKINSONS BUT PSP (google it i f you need to)but it all comes down to the same thing - attitude 2
you have a great attitude and long may it continue for you!
(i tend to post more on the HU/PSP site)
LOL JILL
SORRY YOUR Q WAS ABOUT ALTERNATIV E MEDS
COCONUT OIL IS RECOMMENDED BY UQTIE A LOT ON THIS SITE - I HAVENT TRIED IT YET BTU TAKE COQ10 AND TURMERIC AS THERE A RE NO MEDS FOR PSP
GE TTHE APPROVAL O YOUR CONSULTANT B4 STARTIGN THEM
LOL` JILL
That's incredible, in a bad way that is. PD isn't even terminal although some of the symptoms may make for complications that could in some cases result in an earlier demise than otherwise.
My husband has been treated for Parkinson's for about seven years . He is quite poorly now and is housebound . He had a patella femoral replacement fives years ago followed with an Arthroscopy . at the same time a Strepp infection . The first op took a lot longer to recover from and because of the Parkinson's was unable to manage the exercises fully . On the plus side the severe pain eased . in his case the knee pain was only ever when under load , while sitting he had no pain .
It was never fully successful . It was unfortunate that he couldn't take stronger pain killers to help him cope because they caused him to hallucinate badly
When I was first diagnosed about 9 years ago the neurologist told me I wouldn't die of it I'd die with it!
a shocking case - the doctor should be disciplined. I was advised some time ago that unless your non Pd ailment was very severe you were better off not going into hospital
You need a doc that knows pd! Hopefully you are seeing a neurologist? Perhaps you have balance issues? No physician should have answered your question that way!
Most infections come from extended hospital stays! I had total knee replacement and was hospitalized for 4 days...started physical therapy immediately. You should be fine, unless having balance issues OR if you live alone? Best wishes and good luck.
What total nonsense. I've had pd 12 years and know a large community thanks to the exercise program at the NYC JCC. We've had every kind of operation. What kind of idiot thinks pd is a death sentence. Sorry I should have looked at other replies before spouting off. 
Thanks for the comments at least i have some encouragement, before nothing. Yes I was told to stay out of
hospital, will start antibotics before surgery. wish i had found you guys a long time ago. I also am 1 year cancer free sept 4 that is also a problem with surgery please pray for me or at least email me.
If he actually said "death sentence", I would definitely change doctors. That doctor obviously doesn't know anything about PD and doesn't want to take ANY risks. There are risks with every surgery and they can sound horrible and really scare you, but in most cases those problems don't occur. I had a double mastectomy and reconstruction surgery 5 years after I was diagnosed and on PD meds, and I had no problems. Just make sure you communicate with your surgeon and tell him what meds you are on prior to the surgery and you should be find.
Sick Doctor! he needs to see a specialist surgeon to have a personality transplant, the Dick Head, and other worst things in bold, under lined and so on, you will be fine good luck x
my mom has PD and had a knee replacement (among many other surgeries including bilateral hip replacements, hand surgery, parathyroid surgery, cataract) and did great with all. she remains active and quite functional -- she seems to heal faster after each surgery as well.
I have had arthritis since diagnosed at 5 was told by 20 would be in a chair...I am happy to say I am 52 and only use a walker outside the house and a cane sometimes if it's a bad day in my home...The doctor is wrong just as mine were, I also have diabetes at 28 and a congenital heart condition and was born with that...I was diagnosed by my gp about 2 months ago and about a month got the "official" word...let me tell you if you listen then yeah it is a death sentence... but you can fight it as I do all the time...you need to find a decent dr with a great attitude who will but his or her ass to make sure you get pt and whatever else you need...you need to move my back is awaiting surgery to replace my lumbar spine most are herniated but I walk cuz I want to keep moving I go to pt this Tues my 1st visit for pd but had it after surgery on old arthur...Get you a good dr then keep MOVING!!! it is important to do everything in your power because it will suck when your joints and muscles are tight and saying no let's sit...but you can do it...I have faith you will!!!
PChef,
Like in anything else, nothing will top a positive attitude to enable you to live a good life with PD or any other physical challenge you face.
Don't know too much about knee replacement. Have had a few friends who have had it done. There was a fair amount of physical rehab to get them in good shape but they all did well despite it taking longer to rehab then they were expecting or would have liked. I also have friends who did not have the required surgery and found walking and exercise helped tremendously. Get more than one opinion!
My husband has PD for 11 years. He chose not to go on any PD meds because of potential side effects. The second neurologist we went to (didn't care for the first) advised him to stay off meds until his symptoms interfered with his living his life. (There are two schools of thought on this, but this was his choice since he has had some bad reactions to other meds in the past.)
From the research I've done (my husband leaves all of this to me which I embrace since I am a health practitioner (Certified Nutrition Specialist and Wellness Coach). Here are a few "holistic practices" that have shown the greatest impact.
1. Exercise - many kinds: Yoga, Thai Qi, Qi Gong, fast walking, biking (Theracycyle employs forced exercise where the motor causes more movement than you could sustain on your own.) and dancing have shown benefits. The key is doing it 60 minutes a day or most days. Build up slowly form where you are. If balance is an issue, work with a therapist to insure exercise that will reduce risk of falling. Intense exercise often reduces tremor, rewinds slowing of movement and improves balance. Increased serotonin also improves mood. Pick one or more things that appeal to you and start there.
2. Get enough quality sleep. For most people that is 7-8 hours per night. Sometimes an afternoon nap can help as well.
3. Eat a healthy diet. There are several approaches to this. Most people will see a difference in their energy and mood and often tremor, memory, stamina, pain, spasms etc. if they avoid processed foods and learn to do simple cooking from scratch, increasing vegetables and fruits in a rainbow of colors and incorporating healthy fats along with good quality protein foods. Eating as much organic, non-GMO can be an important step as you move to better eating. Gluten, dairy (particularly from cows milk) and investigating food sensitivities is another layer. Have you heard of using MCT and Coconut oil with a lower carb diet? This is helpful for many people. I believe diet needs to be individualized but as your diet gets "cleaner" it will be easier to see the relationship between what and when you eat and how you feel.
4. Stay hydrated by drinking enough water. I use 1/2 your body weight in ounces as a general guide.
5. Develop a daily spiritual practice which incorporated slow, deep breathing and gratitude for your daily blessings. I read a great quote recently that reminds us that a glass that is half empty is also half full and to be thankful that you have something in your glass! Laugh daily!
This is just the beginning. So, PChef be encouraged that there is much in your own hands that will make a difference as you find a doctor you can have a good and honest relationship with and reach out to others who can give you guidance and support. Celebrate your successes and take a baby step at a time forward. You will be surprised how far you will get. Some days it will seem like you are going two steps back rather than forward but when that happens accepting what is will make it easier to again go forward.
Again, I don't have PD but have had other challenges in my life and I see how despite frustrations and setbacks, my husband and I enjoy living life and are so grateful for all the good we have.
Sorry to be so long winded. Wishing you all the best,
Judith
What good advice that I am going to follow I have started a parkinson exercise class that is helpful and also fun and you get to meet people with the same problems thankyou.
AnthonyLan,
Sounds great! Keep having fun and finding new friends who understand you the way some others may not.
One pesky little drawback with being born a terrestrial life form is the expiration date that comes along with the package - we all have one. Unlike doctors who keep up on their journals and recent studies, however, it's likely your doctor will soon go the way of his fellow dinosaurs and reach his/her expiration date well before you meet yours. The more savvy doctors recognize (as do numerous credible studies), that people with PD can have the same life expectancy as their fellow terrestrials:
"PD is not a fatal disease, and the average life expectancy of a person with PD is generally the same as for people who do not have the disease. However, in the late stages, PD may be associated with complications such as choking, pneumonia, and falls. Fortunately, there are many treatment options available for people with PD." Source: ninds.nih.gov/disorders/par...
"Life expectancy for Parkinson’s patients is often about the same as for the general population." Source: healthline.com/health-slide...
"Ten years after a Parkinson’s disease (PD) diagnosis the survival rate among people with the disease is the same as for the general population, according to a study published online in the journal Movement Disorders." Source: pdf.org/en/science_news/rel...
[a Google search will produce numerous similar results]
*Normal 'care & maintenance' warnings do apply however in order to qualify for an extended waranty with your "package": premium fuel/supplements, consistent usage of moving parts (exercise), and interaction with positive people (deadbeat doctors must be avoided).
The information I am providing is from a friend in a PD support group I belong to. She has PD and has recently had back surgery. These are recommendations for someone having surgery.
A few things that are really important
1. Make sure you take PD meds on time do not skip or postpone doses
2. Resume PD meds immediately following surgery
3. taking Azilect or Selegline do not take Demerol!!!! Best to stop either of these meds 2 weeks before surgery
4. make sure the anesthesiologist knows he has PD
The National Parkinson Foundation has some excellent info on having surgery. They will send a whole kit called "Aware in Care". I think everyone should have this info.
Thank you Thank you thank you. how do i get a kit?
Greetings Pchef,
Everyone has a death sentence (life is a terminal condition - nobody survives it). What that doctor was really telling you is that he wants to maintain his track record of successful surgeries by not performing arthroplasty on high risk patients - which is what all of us Parkies are. Artificial joints do not generally fare well during falls, and falling is the future for many Parkies. Because we are more likely to fall than regular folks, we are more likely to damage an artificial hip, knee, or ankle, and require a repair or re-do, which most surgeons don't like to have on their record. When I was shopping for an orthopod to do an ankle replacement I had one surgeon admit he wouldn't do it because I had PD. Shop around - you'll find someone.
Other than making certain your anesthetist knows you have PD so he uses the right mix of anesthetics, you should be fine. Hubby had gall bladder out several years after being diagnosed. That doc should be shot and reported. Make sure you order an Aware in Care kit so you have the list of meds to avoid. Best of luck to you.
ordered the kit yesterday Thanks will keep all posted
Hi Pchef. I have been away for a month on honeymoon. I have not read anyone's replies as I don't have the time at the moment. If you want a lot of info on PD then go to my website reverseparkinsons.net.
John
Hi-- I see that this post was several months ago. I am wondering if you ever got your knee replacement. I have PD and needed knee replacement. I was in a wheelchair because the pain was so bad. I tried everything to avoid surgery but had no choice eventually. It has been 2 years and my knee seems to have never really healed. However, the pain is not the same as before surgery and I know that it did help. I went to several orthos before I decided to do knee replacement. One thing that I liked before the surgery was exercise in the pool because it enabled me to exercise without putting weight on my knee. The physical therapy place had a treadmill in the pool which was great. Also, I find that wearing a compression brace on my knee helps the pain a lot. I have also been told that part of my problem with knee is my weight. If you are not overweight you will have an easier time with knees. I hope some of this helps.
Trying to find alternative Iron medication.
Ketogenic Diet Information
Trying to help my Sister
