Support needed. help me understand
Good morning and hello to all. I don't have the tremors I have hurtful stiffness swallowing bladder problems and feel disconnected to the world. My compassion and passion are nill. People don't understand family gets mad at me I'm so frustrated.
The lack of pleasure/passion experienced by PD patients is called anhedonia and here is an article discussing this non-motor symptom:
Thank you. Today has been over the top and at 54 this isn't how I wanted my life
Hi. I just turned 53 and have been taking lev/carb for about 2 years. My neurologist diagnosed me with Parkinsonism. I have been reading these posts for several months and they have helped me feel hopeful. I am rigid and sore all the time. My symptoms started with a tremor in my left hand. Please hang in there and reach out. There are many here that can help. I am taking fish oil & vitamin b 12 plus an antidepressant I read somewhere on here about the vitamins and that exercise is key. Unfortunately I’m not very good with that. Remember that there are good days too. You are in my thoughts.
Very insightful info. Thanks for sharing!
Hi Paula..yes, the emotional part of this disease is unbelievable. How long ago were you diagnosed? It’s very natural to become angry and disconnected. I was diagnosed almost 6 mo ago and still have these emotions.
I also have family and friends that still don’t understand and this is very difficult. One even told me I could quit the tremors and shuffling if I really wanted to. This really hurt.
Please hang in there, Paula. This group will help you so much! If you ever need to talk please feel free to message me, ok?
The feelings you are having are so normal.. please hang in there
Believe it or not 9 years ago. They have changed added and played with my diagnosis to com3 back to type A Parkinson's. My father died couple years ago of Lewy Body Parkinson's. Thank you so much for reaching out
yes, i think the emotional aspects (or lack of) are worse than the physical. it broke up my 15 yr old marriage, because after becoming mercury poisoned, it was 4 yrs before i was finally diagnosed with pd. and then after my first dose of sinemet, i was back! my personality returned. there are some things that arent totally right - like i havent cried in years, but i will get emotional - look and sound like im going to cry over stupid things, like tv commercials or sad songs. but basically the sinemet has brought me back to life. its been 15 years, and i have some dyskinesias, but id rather look like a crackhead than a zombie.
Jujulini.. exactly though I tried Sinemet, but it wasn’t for me. My Neurologist, next tried Mirapex and after many trials and errors, it is starting to work. Once you’re meds get adjusted.. you will start feeling better, but the emotions will always be there.. this is normal to have the emotions you are having.. I am here for you!
Thank you. I just want this all to go away and be normal again
Wow. I was in sinemet for 8 years They changed it to requip a year ago. I was on lots of neurotin for the pain and zombie I became so found a healthy solution but pain still an issue. I was the most social butterfly ever and last few years a recluse. Ugh. Hate me
Oh, Paula, I am so sorry. I know how hard it is for you , but please don’t let you give up. By you’re picture you are a beautiful woman and all of us here are here for you! Read this Marty Hinz, ok?
Thank you. I appreciate you all and you have made my day. I feel there is hope
Im a recluse cause...habd tremor..sinemet Does Not help tremor
Meant to say bad hand tremor
When were you diagnosed. I too, wouldn’t leave the house or socialize for quite a while because of my stuttering, shuffling and tremors. I get so embarrassed to be out in public and see the sympathy from strangers, but force yourself to go out with a good friend, or someone that makes you feel good, it will not take the tremor away, but will help you more then you know
How long have you been taking sinemet
rosabellazita - i have been taking sinemet for 11 yrs. started out with 25/100 every 4 hrs. currently i am taking it every 2 hrs. i never had tremors, though, only stiffness/slowness.
Has it gave u dykesia?
8Years. Same dosage 3, 3 X a day. I got scared of long term effects.
I wish Sinemet had worked for my husband. It sent him to sleep as if he'd had an anesthetic. Are there any other meds for PD that don't have that effect?
Paulajay i want you to look up Marty Hinz AMINO ACID Therapy for Parkinson's. I have been on this drug free supplement regimen and it took care of my anhedonia problem completely, and reduced the stiffness and all other symptoms nicely. No side effects. Look it up!
bassofspades---how long have you been on the amino acid regime? doesnt the amino acids interfere with the absorption of dopamine. protein does. arent amino acids protein? and i checked out the website for the protocol; do you have to pay for the consults, or is the info available to do on your own?
These are great questions. Amino acids are the building blocks that proteins are made of. You dont injest dopamine because it wont cross the blood brain barrier. You take the amino acids in combination with co factors that facilitate getting them across the bbb then they form dopamine etc. Ive been on this regimen since july. You should not try it on your own just to be safe. I called dr Hinz's company and got the name of a dr not too far from me (120 miles!) that is experienced in the protocol to consult with. Its a lot of trial and error at first and dosages vary greatly from one person to the next. Good luck to you! If you have any more questions feel free to ask.
Wow. You can bet I will. I read somewhere maybe Dr Axe talks about that. I will look it up
I will shoot you some links to check out when i get to my home compooter. Hang in there! We'll get you back to being you.
This group is here for you.. we care!
You are so sweet. Thank you. I believe you.
What is andedonia
the inability to feel or experience pleasure.
Wow, it has a name. I've felt disconnected and lacking of passion or much interest in anything for a long time, too. So I sure understand how you feel, Paulajay.
I have six kids 4 grandkids and been a single mom forever. I'm a loving person and this part of me is killing me. I have to have me back.
Do you have the support if you’re family?
My kids all know me as super mom and your ok mom. Older kids are out and on their own and no one pays attention. Youngest boys are 15 and 17 and they are my angels. Always helped and have empathy. My brother sister mom etc are all in Oregon. I'm in Ohio
Yes, that makes it difficult..my daughter is in Northern Mi and every morn sends a heart..my husbands kids are all over, but try to give support to their dad and me. My son still hasn’t acknowledged and I know the hurt . My brother lives 2 miles away and doesn’t speak.
That’s why for me this group has helped me so much. Also I have strong support from my church..but PaulaJay, I’m in Tennessee, but am a good listener as is all on here
Bassofspades, amino acid therapy has helped your emotions too? I'm still considering it, but have to wait until after upcoming cervical spine surgery...ugh. Also saw a movement disorder specialist yesterday at Muhammad Ali Center and all they want to discuss is medication...no doctor wants to hear about amino acids.
Yes it definitely helped with the emotional side of things! I had anhedonia so bad, my kids thought i didn't care about them. No dopamine means no reward system which makes nothing seem to be worth doing. We'll get that balanced out and things will get better. I will help you as much as i can. Long term, pd meds will cause more problems so lets try to get everybody off them if we can.
Thanks, my main fear of amino acid therapy is all of the pills and my very sensitive stomach. I have been trying small amounts of mucuna, using Silvestrovs method, with EGCG
Nausea may be caused by the amino acids not being properly proportioned to each other. Also, if the pills dont go all the way down and dissolve in your esophagus. Mucuna + EGCG is something I have tried as well, and it can help. I had a great reduction in my stiffness with that. Green tea contains a good amount of EGCG, along with other beneficial constituents. Wash the mucuna down with green tea.
Where do you buy all this or do you order online
I want to know too
That sounds like a wonderful goal. I've written elsewhere here about how PD meds send my husband into a deep sleep. I'll be waiting eagerly for further advice from you guys.
I know how you feel. It is so frustrating to feel disassociated. Have you tried taking NAC? I think it helps a lot with stiffness and also brain clarity and emotion. I am 53 but have only been diagnosed for 2 years.
I wonder if anti depressants might also help. Maybe worth giving them a try?
Over the last 9 years I've been on Celexa then Cymbalta then Lyrica. I hate drugs. I felt like the walking dead. Neurotin was added and zanaflex at night and sinemet and the Dr would just say ahhh i think this will work. When I said how bad my neck hurt and how my muscles squeezed he decided I had dystonia so let's try botox shots. Besides being hurtful they made me worse and was discontinued after second try.
my dear, it sounds like you are severely over medicated. Lets get you back to normal! Doctors shouldnt be throwing pills at you like putting band aids on a bucket full of holes. Please take some time to read through some of the links I posted. If theres anything there you dont understand I will help you. I would love to see you, and everyone who can, be drug free.
Let me just add that the amino acid protocol is not 100% perfect. I still have symptoms, though they are way down to a level that I can handle. Depending on the dosage your brain requires, it can be expensive as well. All in all, it is very worth exploring.
Thank you so much for listening and understanding. I am,on a strict budget but gonna try a few of these things
Theres a million things you can try that work for one person or another. Not all things work for all people. For me, i research as much as i can and try anything that makes sense and some things that dont make sense. This forum is a good placeto start
What is NAC
N-Acetyl Cysteine is a precursor for Glutathione, which is known as the master antioxidant and is VERY GOOD FOR US people with parkinsons!
Is this a Supplement
Yes it is. Cysteine is found in raw milk and breast milk
Here are some links you might find helpful in your research on Amino Acid Therapy. By the way, amino acid therapy is used for a whole bunch of other conditions as well as PD!
chknutrition.com/ Marty Hinz's company
chknutrition.com/locate-a-p... they can help you find a Dr that knows the protocol.
healthyselfnow.com/MTOproto... a great overview of the protocol here.
dovepress.com/parkinsonrsqu... a little light reading. If you can read this and understand it, I applaud you. You would make a great doctor. I studied it and its great!
neurosupport.files.wordpres... more light reading.
neurosupport.com/ scroll down for 22 articles of light reading. you will be the equivalent of a PhD when you finish them all.
Other links to consider (look before you leap):
"the [medical] board has taken several disciplinary actions against (Hinz], starting in 1996 when it suspended his license after he was hospitalized in Duluth for bipolar disorder with sleep deprivation. Later actions show continued concern over his ability to practice. It suspended his license again in 2001 after a skills audit 'identified concerns with [his] medical knowledge, prescribing practices, competency, and recordkeeping,' but stayed the suspension contingent on his full compliance with the terms, provisions and deadlines set by the board. The license was reinstated in 2005." Source: startribune.com/fda-acts-ag...
And comments by Michael S. Okun MD (bestselling author of '10 Breakthrough Therapies for PD'): "We cannot confirm the accuracy or substantiate these claims... we are concerned about the suggestion that people should come off of this medication and move to medications that may place them at risk for falls and worsening PD symptoms which could lead to worse outcomes." Source 'Carbidopa Increases Death Rate?': forum.parkinson.org/topic/1...
I have Fibromayalgia as well or so they say. Thank you for all of this wonderful info
PaulaJay, It is unfortunately part and parcel of this horrible disease. People, unfortunately whether family or friends, just don't get it. Remember or try to remember you are still you. and try so hard to go with the flow, Thinking of you
I'm sorry, but there's a lot worse things to have in this world. Just look at the other groups on this site. I was like you in the beginning. (3 years ago) I felt like an invalid, plus I needed 2 knee surgeries, and I am in constant pain somewhere. I lived for PT and OT until I found this site, and other people yelled at me to EXERCISE. There is a Parkie named JOHNPOPPER who was my inspiration.. He has been Fast Walking an hour a day for 8 years, and is doing great.
I started with a Spin Class for Parkies. After 1 session, I felt the difference. I am also in a water Aerobics class 2 x a week. EXERCISE. I have a dog (Very Highly recommended for Parkies) both for walking and napping. Anyway, you MUST exercise. Big Pharma has spent $32B on drugs but the only thing that really works is Exersize.
John Pepper has been an inspiration for me as well. Norman Doidge (Canadian psychiatrist) described John's case in the book "The Brain's Way of Healing" which I got from a local library and would highly recommend. John Pepper also has a website:
Although, his PD has not been cured, he manages it very well - you can also find him on youtube.
Paula, may you be given strength and support when you need it. I believe our bodies have everything they need to be healed if we allow them to and exercise along with healing digestive system is a priority. Our gut is a "second brain" which communicates with the upper brain, so we need to focus on regulating intestinal flora which is of utmost importance to our health.
Personally, I am trying to stay wheat-, dairy -, egg- and soy- free as much as I can. Those are major allergens and even though many people don't react to them immediately, there is can be a delayed reaction which makes it hard to connect the dots.
Most people are allergic to chicken eggs without realizing it, because eggs are used as a medium to grow vaccines. Three people in my family who were tested for food sensitivities turned out to be highly allergic to eggs without having any visible reaction. And to great surprise all of them had extreme sensitivity to almonds which we loved! So, there is a lot of homework to do but hopefully it will pay off...
How can a Parkie exercise if he can't stand or walk? I can't get my husband to try the seated exercises. Do they help in any real sense?
Hi for your stiffness / pain I would find a sports or deep tissue massage therapist and get a full body massage...once you have a few sessions to loosen things up you can do exercises (or not really exercises just rolling) on a foam roller in the house to reduce the muscle tension. I have a bit more info on the foam roller on some of my other posts if you would like to check. Then for the disconnection I would seriously give meditation a try even start with ten minutes a day....there is no down side here as it’s free and at worst won’t help but at best could make you feel a lot better. Lastly do some form of exercise even if it’s 10 minutes walking just start with something; don’t over think it just try to start something. I would imagine if you done all 3 of these things ie meditation, exercise and massage / foam rolling it would make you feel a lot better physically and more importantly mentally - you need to break the vicious cycle ie....feel bad mentally makes physical symptoms worse, this makes you feel worse mentally and so on. Bring these things into your life enough and they will soon be habits but the hardest step is making the first move! All the best and good luck to you if you need any advice on any of this drop me a message.
Hello First you are such a beautiful woman and I am so sorry this is happening
My husband was diagnosed end of 2015 but when we think about it he probably has had PD for many years He is 75 and it is progressing very fast from his movement to his cognitive state
I am 62 and still work as an assistant nurse so funnily enough work with this all the time
We say to each other that this isn't what was supposed to happen but it's what we got dealt so we make sure we keep a sense of humour and face each day and stage as it comes
I hope you can find a way 🌞🌞
The early days are difficult as you are still 'in mourning' for the loss of the future you had expected. But the future can still be good.
Tell your neurologist all your symptoms at your next appointment so that s/he has the full picture. Meanwhile excercise to maintain your movement can also reduce pain - and if you can find an activity you like it should improve your mood as well.
Be kind and polite to your family. They are also facing a different future (and they're not to blame for it).
I hope that I can help you. I have had Pd symptoms since 1963, although only diagnosed with Pd in 1992. I have been able to overcome most of my Pd movement symptoms since 2002, when I wrote a book about it. I am not trying to sell you a book, but it would answer a lot of your questions. You can look at my profile on this website and contact me personally. I will help you, if I can.
My heart goes out to you. I started this pd journey 10 years ago when I had slight tremoring in left hand and head tremors. Also weird shooting pains bottom of foot. Took time to get a diagnosis cause I basically stopped tremoring and dealt with extreme stiffness, pain bladder and g.i. issues plus hard to stand from a sitting posiition. Now diagnosed with pd and take sinament plus azilect which helps some. I think of the most annoying was finding an informed neuro who keeps up with the latest info and is willing to understand ones who show no I visible indications of pd yet will try the meds out Thankfully my neuros did at a teaching hospital and am so grateful. I have good and bad days with no apparent reasons why. Exercise is very helpful. Pd has changed me, but I refuse to give into it more then I need to. Sometimes I'm forced to stay home from events cause of fatigue. Yesterday tho got to go to a wedding. I had to rest for a couple days before and had clothes all ready in advance. Life is different, yet still can participate in a few things.There is life to live. Take care of you!
There are a lot of nasty ailments out there but there is nothing nastier than a brain that doesn't work properly.
Its probably urinary tract related. Get some cranberry pills! Ease up on the caffeine: tea, coffee, sodas & chocolate because caffeine will cancel out the benefits of the cranberry pills. You can drink decaf tea, decaf coffee, sprite, 7-up, Fanta sodas, kool-aid, and don't forget water! Whenever you feel lost or alone or a little confused, have a glass of water! You are dehydrated.
I take AZO every day. I’m prone to UTIs and it has been better. I still get the infections but not as often. I know this sounds weird but I drink a gallon of water a day. That keeps me going
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