The majority of my day involves complete immobility with medication [+24 tablets daily of 25-100mg Sinemet], failing cognition and memory, moderate peripheral neuropathy, complete body pain in muscles/joints/nerves throughout day, imbalance/dizzy, loss of smell, high fatigue, complete feeling of apathy/lack of pleasure, high anxiety, drooling, bouts of severe emotions including crying, hallucinations and paranoia, etc.
I am considered young onset with being diagnosed in about 2003 or 2004. @ 51 years old now, with a family of 3 boys (8 yrs, 11 yrs and 19 years) and wife. I am trying to continue with my work and stay optimistic for my kids and wife, but I find it challenging to cope with my PD every time there is a new symptom. I thought PD was a slow moving disease.
My question/comment from those of you that consider yourself as advanced in this disease, is: When you somehow manage to adjust to a new symptom and then another one comes along, how do you get the will and energy to cope with the next problem? I really can't imagine living with this for another 25 or 30 years. Weirdly, I feel like PD is not going to kill me quick enough and instead I will suffer the worst slow death one could possibly experience.
I know the typical motivators that we should use to keep going are: kids, wife, religion, hobbies and... but at some point even these supports don't seem to do it for me.
Sorry to bring this topic up to those of you that are just getting the diagnosis. Hopefully PD will be cured or at least controlled better for you so that you won't face the advanced stages of this nasty disease.
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I just looked up one of your other posts from a couple of weeks ago and Ann8Cr responded to you about Rock Steady Boxing. See if there is one near you & start classes right away. I was diagnosed in 2003 at the age of 46. I started RSB over 11 yrs ago & it has helped me more than anything. Everything that Ann says about it is true. I was one of the first dozen PwP's that had the privilege of trying it out at the headquarters in Indianapolis. Now there are over 550 affiliates around the world. Good luck & keep fighting! You will start feeling better! What city do u live in?
I believe they started an online course for coaches. Check the website rocksteadyboxing.org. Also check out PD Warrior. I think it's a similar program that has an online program. One of the great things about RSB is the connection/commeradie with other PwP's. The exercise is the most important, but the people understand each other & become a "family" that help each other.
I am really sorry for the pain you have been through. Stay active, eat healthy, meditate. Contact Dr Costantini for an advice. if you need his contact details please send me a message I will forward you his email.Don’t loose hope. Who knows if we wake up tomorrow and see that scientists’ found a cure for PD.
- There also is nicotine patches, a therapy developed in France by Dr G. VILLAFANE. The protocol is quite complicated. But I have a friend IRL who is very satisfied with it.
You are right there is always some new side effect that happens and you loose hope of how to handle.. I have begin reducing my wife's carbo Levo and pramipexol by 1/2 tabs on each begin with one and increase in a couple days, and I made up mucuna capsules that I give in between regular dose of carbo and for last 5 days she has improve a great deal, what a blessing to us both. Two mornings at 5am she frozen I gave her gave her a puff of canines and she relaxed sleep till 8:30am woke up and was hungry. She ate 2 bowls of home made chicken and that's when I started reducing meds. Just tell I g you what we are doing, so hang in there. The doc ask us to try a new drug for research study called abbv-951. I will see what happens with what we are doing. Do not think we want to do that. This is in Arizona and have contact if you want let me know. Think they may do in other states.
Thanks everybody for quick responses. I have provided advice to some of you recently concerning ways to fight the disease and ironically I now am in desperation myself. One of my problems is that I also am fighting Epilepsy; I just went back to my neurologists yesterday and they think that am having seizures for some reason again.
I will definitely look into boxing here in Denver. I just ordered some Mucuna because many of you have discovered that it does a better job, if used correctly, than Carb-Ldopa only.
I still need to find a way to fight the major depression/apathy/anxiety that PD is generating for my short term benefit while I get some of these suggestions (boxing, mucuna, etc.) to take effect.
I really am sick right now; this is the lowest point I have been in 14 years. I went from a great attitude, very athletic and a fighter thru many hi/low points to today with multiple physical and mental issues.
I will survive but it sure is knocking me down at the moment.
I hate to see you suffering so, as you are too young and with a young family. Not fair! Here's how i would approach such an advanced stage so young.... first of all, identify and remove all possible causes such as toxins, chemicals, lack of sleep, mercury, anything that can advance progression. Next, i would go completely organic in diet. Lastly, i would seriously consider stem cell implantation to repair the extreme damage that has been done. Im 48 and so far keeping progression down to a crawl but i have young kids too and im not ready to lose this war either. Good luck dboobar, im rooting for you! Btw if you have seizures dont let people at rsb hit you in the head.
Its not fair for any of us! Those of you that are older (not referring to you bassofspades) have worked very hard to retire and enjoy a calmer, low stress lifestyle. Then you get PD and your hobbies become too difficult, your relationship with your wife or husband gets strained, you don't feel like visiting places that you always wanted to see but never had time for in the past. You start having other medical problems in addition to PD.
Basically, you work all your life hard so that you can retire and enjoy. But then Parkinson's destroys all of this.
I think PD needs to be cured immediately. Why is it so difficult to figure out? The disease has been around for ever.
Whilst I applaud your 'stickability' in that you've worked so hard for so long, if you could consider giving up work, that would be good I think? I've sort of elected to do this currently (sort of by default) and I know that financially it's going to be hard but changes in life's circumstances are inevitable on our rocky road and that goes for non PWP too. I have kids (both 16 so not that young I suppose) and the decision to end work has caused certain tensions in the home BUT I firmly believe that fighting PD is a full time job in itself if you're going to do it properly. I still have ups and downs but my symptoms felt quite a lot better 3/4 days into throwing in the towel at the dreaded workplace.
I was crazy to do it; but I started an aerospace company 10 years ago here in Denver. Check out amt-aero.com. It was doing pretty well (up to 10 employees) up until I started to have serious Parkinson's problems and started having epileptic seizures. We had to start letting people go and down sizing. Now we no longer have a building and I do engineering consulting. This transformation was very difficult for my confidence. Today I have more work than I can handle; but I don't want to give it up! I feel that if I quit completely then I have lost the fight. But my customers are beginning to become frustrated with sliding completion schedules. More stress for me. This is not good for PD as you know. What should I do?
I will advise NOT to give up. Calling it a day will do nothing than further shattering your confidence. Personally I have the experience that when I am on work , I feel better compared to when I am on vacations.
Try different remedies which are unexplored so far by you. One thing that doesn't work for someone doesn't necessarily mean that it will not work for others. I am following a recent post by a forum member in which an African herbal medicine "Ibogaine" has done wonders for him. Try following herbs also. Remember that the results will follow in a month or two
1. mucuna powder
2. Bacopa extract
3. Ashwagandha extract
4. Ginko biloba
5. Bulgarian belladonna
Have a regular exercise for about 30 minutes. Motivate yourself by bringing in mind that your kids need you in good shape for their wellbeing.
One last thing : Sleep minimum for 8 hours per 24 hours.
I don't have advice, but we're in the same boat, also with young kids and in the thick of things. Perhaps an antidepressant? I'm not sure how a person is supposed to have the energy to fight a disease where one of the actual symptoms is the feeling of apathy, from the brain itself.
crazy isn't it! Even trying to keep your support group on board can be challenging as we have to fight that desire to do nothing and our caregivers can't understand why we sometimes have a lapse in the desire to fight PD. I'm normally a winner under all circumstances! With PD I have times much more often than I ever thought where "I'm done" and "ready to give up"; completely contradictive to my personality.
You might have some ideas for me concerning kids however. When we are constantly fighting the apathetic feelings and we are caught acting tired or lazy moments are captured, how do we push our children to be ambitious, hardworking and driven. My kids only have known me when I had PD and their real recent memories involve my issues with feeling sick, slow, uninterested in going to do things, seeing my career drop off. But at the same time, I am trying to push them and say that being lazy does not work. I want them to be successful. Do you have any ideas on how to keep them on the right track while at the same moment, at times, the disease is telling you personally to pull back, slow down and let things ride a bit?
As for PD and apathy, it is completely true that once you have really been exposed to Parkinson's and the dopamine is low, we feel emotionally empty and nothing is fun. People that don't know better say it is depression; I say it is truly the state of complete emptiness in the mind in terms of emotion. Even though I cry or act sad, it either is an act (not necessarily consciously) or it is due to a brain chemistry imbalance or in some cases pseudo bulbar effect. I'd say that some of you with PD are very good with controlling your emotions and are able to keep it together but I also believe that everyone that truly has PD at some point, will begin to lose control of their mind and start to struggle in areas that are not only movement. Be prepared for this as it is a very scary place to be.
Rocksteady Boxing is the ultimate support group. There, you don't have to talk about PD, just the fact that you are there and you know that every one else has their issues also. The unspoken words of supporting each other are loud and clear. Did I mention there is great physical benefits as well?
Re your kids. They can remember dad as being a good role model to the end, or not. That is your choice. You can leave them with a positive learning example of how to face their struggles, or not. I told my family that I did not want to be spoken of as "he fought Parkinson's for xx years. I would rather they speak about me as someone who tried to help his body be as strong as it could be, so Parkinson's had to do the fighting to enter.
You have choices. How do you want your situation be? Something your kids will benefit from or will they learn to give up when the going gets tough? It is your choice.
You didn't intend to do this, but you have just done something very positive for me and that is jolted me out of the "poor me" phase I have been in for the last couple of days. The PD symptoms you are enduring make my own seem paltry and my attitude to them very childlike. Thanks for your chilling honesty mate, you have helped me more than you could possibly realize. Good luck with your search for a better life. You will find it.
I've personally had the same reaction you are having from other past messages from people struggling. PD can be very cyclic in nature and we all experience it in a slightly different way. For example, I am amazed at how much some people want to live life when they are willing to go to China for STEM cell implantation (see Motherfather's story below in the next posting). I am lucky to be alive and very fortunate to have a wonderful family; my egocentricity gets in the way much too often!
You don't have to fly to China to do the stem cell deal.. We have a friend who did it in Del Mar, San Diego county, CA. stemgenex.com/studies/parki... If I remember right it was about 16,000. Not paid by insurance. They respond fast to questions and can give you the estimate for yourself. There is another place in Forida, I think. Do a search if interested.
I recommend that you do a search of StemGenex on this site - and do a basic search on the basics of stem cell therapy/ies - before posing as a witless PR agent. Like all companies offering 'cure-all' stem cell treatments using adipose (fat-derived) tissue, it is a pure, unadulterated scam - fat cells do not, will not, can not become the DA neurons that PD patients require for any semblance of recovery. StemGenex is currently the subject of a class action lawsuit.
The clinic in China from where Motherfather has got stem cell therapy uses embryonic cells from discarded fetuses. I had talked to them in details. They charge around 20k USD and their treatment spans over 15 days. I had specifically asked them about the type of cells they use. Their reply was "The stem cells from your own body can not be used to treat your disease, because Parkinson disease is due to gene mutation in brain nerves, your won cells have gene mutation, so it can not be used. Our stem cells are from fetus' nerve tissue, it is the best stem cells to treat nerve disease. "
I dropped the idea of getting their treatment due to feedback from some patients. According to some of them, the treatment almost eliminate the symptoms, however it's not long lasting. The positive effects remain for few months and maximum up to 1 year.
Thanks for the info, I am very interested since we are considering it and want all the information we can get before venturing on something so expensive. A friend of our family who is a retired medical doctor had it done about 4 years ago and he still says he has no regrets. He and his wife think it benefited him. He is doing well in his early 80s, but is also very committed to exercise. With my husband suffering from this condition , I am only trying to share crumbs of hope as I find them. We need people like you who can offer additional info and to help us make decisions that make sense.
Also the FDA cracking down on this stem cell treatment is by far no proof that it is not helpful. The FDA is infamous for cracking down and suppressing various natural , alternative treatments that are successful for a lot of people. Consider their treatment of DMSO for may decades even though it is very helpful to people suffering from arthritis.
I did look this up. Out of 100s of patients 5 are dissatisfied. Won't this always be true? It seems there are always people willing to go to court about anything and everything. This is from 2017 and I can find no news about how this was finally resolved in 2018.
Drawing such lofty conclusions from a superficial grasp of the science (at best) is hardly a sign of intelligence. The FACT that the adipose tissue (fat) that StemGenex and others currently use as the source of their cure-all therapies will NOT differentiate into the DA neurons missing in PD patients continues to evade your faculties of reason. As an adult you've apparently mastered the art of looking both ways before crossing the street. I recommend you extend that to costly, life-altering medical procedures.
Wow, you must be some super scientist. I am not trying to sound intelligent. However I do believe that our friend who is a retired medical Doctor is an intelligent person who would not likely have jumped into this without thoroughly researching it. I also believe he has enough integrity to warn us it did him no good when we ask him, which I have done. I think the jury is still out on this. I Just trying to find my way through this trial one day at a time and be kind to people who are also on this journey, since I know it is not an easy road. I have cancer myself ( found out in Dec of 2014) and have found out how much kindness and compassion mean to people who are going through a hard time. Maybe you could use some practice in how to say your opinions in a nicer way? Did you know that the mainstream news media are not known to be friendly toward natural alternative healing methods? I hope you are not relying on them for your information or on the FDA either. If you do I am truly sorry for you! I have to tell you I hardly believe a word they write or say. They are about as right on as Quack watch with Dr. Stephen Barrett. However I am sure you completely agree with him.
Fat derived stem cells. That was the success my wife experienced here in New Mexico, USA. Her knees hurt severely. After the procedure much pain reduced.
So... because tissue-derived stem cells helped with a tissue/cartilage issue, you conclude they will convert to the DA neurons missing in PwP?!? A few minutes of reading about IPSCs (induced pluripotent stem cells) should clear your confusion.
well first i would like to say i feel very sad for you but that wont help your pd,im one of the ones who had stem cell treatment in china.its costly but i was able to come up with the money,,,lucky me..i could feel it getting worse so i thought fuck it, im going to do it,,i went to a hospital in beijing it lasted 2 weeks they put plastic bags of fluid into my hand every day then 3 injections into the bottom of my spine that was the stem cells there were people just like me with different things wrong with with them.one was a little girl about 5 it broke my heart as every time i saw her i cried any way they dont promise you anything it cant be cured but it did help..im still taking different things.and exercising every day.so please dont give up hope.you need to try different things.as you have nothing to lose regards john.
wow! I am impressed with your desire to live. Going to china and dealing with huge adversity to keep alive is admirable. I will pray for you. How long ago did you do this? How are you feeling now?
well about 5or 6 months ago im feeling better than the way things that were happening to me,my face was starting to freeze on the left side of my face.thats when i snapped i just up and done it.one of my daughters wanted to come but i said no.but im hanging in there now still exercising 7 days a week i even have abs at 71 .hang in there cobber,
Thank you for sharing your story. Can you please elaborate more about the procedure (Stem Cell Therapy) and the degrees of the relief in your symptoms since you’ve had the treatment?
well kia you know what its like having pd you would do anything to make it go away.well as for stem cell it dont cure your pd but it helps a lot im very confident in myself i listen to what say here on healthunlocked.i have a book and if i see something on here i write it down.then try it.as for stem cell i spent 2 weeks in beijing in a small hospital its expensive us dollars about 18000 dollars.you can have someone stay with you as well for free.u exercise every morning..you buy your own food as well u have a drip going through your arm every day,and 3 times you get stem cell treatment 3 times in the base of your spine.if theres a next time ill try and get my own stem cell used on me.so u just do the best you can..as people here tell u exercise every day..try different things as you have nothing to lose and everthing to gain..regards john
It sure sounds like you have been deluged with many problems at once. I think the replies have given you some great ideas to try to make some changes. In another life I was a mental health counselor, now PD seems to be my full time job. That being said, the thing I notice is that you sound like I do when depression is taking over my life. You might ask your care providers if they have any suggestions for dealing with this.
One thing that I always tried to emphasize to young clients (like you) is that depression is a temporary condition, and will ease off eventually. Mean while, you need some comfort. You know the people, activities, or foods (oh, you know, like chocolate) that comfort you. Indulge in all of these until you start seeing the light of day again, especially the company of people who make you feel good
My counselors are not versed in neuro areas where much of the problem is biological and not necessarily psychological. Apathy and not depression exactly due to mostly the lack of dopamine; my disinterest in everything comes from getting little pleasure out of anything.
This depression is not temporary; things will and are continuing to get worse. This is reality for me. I am too smart (I am not trying to brag) to think that all will be good soon. My main complaint is the tremendous pain and complete discomfort that I experience during my "off" times; it is nearly unbearable and I cycle through this state every two hours night and day, I have used almost every means of exercise, medicine, thought process, prayer that I know or have been given to alleviate the feeling that envelopes me every 90 minutes or so. If it were just me feeling bad emotionally I could deal with it! But I am having physical symptoms that are out of control.
Thanks for trying to calm my emotions but this "every 90 minute" reality is dominating my complete existence.
Sorry, I did not mean to imply that anything is going to change your reality. PD depression and apathy are definitely a biological chemical problem. I too have struggled with explaining this to people. Still, we can get a bit of relief. Some antidepressants assist our brains in using dopamine more efficiently i.e. buproprion and effexor. I am no longer able to prescribe medications, but “doctor shopped” until I found a gp who is very helpful.
I am 22 years older than you and further into the course of this disease, which doe s NOT mean that I have more answers than you. I have used up more options: DBS, Rytary, other med combinations. None of these have been an “answer”, but all of them have helped me and I recommend trying anything and everything to make your life more bearable.
I still have periods of time when I enjoy life and hope you can find these bits of time also.
Thanks for your clarification. Because of my memory problems and severe movement issues (not just gait freezing), I have been denied the DBS procedure by two medical institutions. But I am curious on your opinion concerning the Duopa pump where we get continuous Ldopa infusion directly into the lower intestine; it supposedly limits the "on" / "off" variations well (I have tried Entacapone, Rytary and others for getting trying to even out the highs and lows; everything has resulted with bad side effects). I still think that amino acids will be a problem because the body will favor digestion of meat & dairy first before processing the Ldopa from the Duopa infusion.
I prefer not to have something (tube) sticking out of my stomach and having to carry a 3 lb dispenser with me everywhere, but as you said: "I recommend trying anything and everything", so I need to consider it; right?
Yes, I think you should consider it, and it sounds like you have already considered it and almost decided not to go that way. I do not like the idea of carrying it with you, also. When I was considering it, my neurologist did not really like it.
She felt that it was too cumbersome and she had heard about problems with inflammation and infection. But it was easier for me to shelf that idea because I could have the DBS. There have been numerous problems with the DBS as well. My surgeon placed it incorrrectlyand it took a year and a half of misery before I came to that conclusion and got a second opinion concurring that the lead was stimulating areas that caused nausea, vomiting, dyskinesia, etc. I also know a man who had to have the DBS removed twice because of infection problems. So, every thing has some danger.
If I had not been able to get the DBS unit working correctly, I was considering ablation of the target area, like Michael J. Fox had. It gives a similar result to DBS, but it is not reversible. ANd we have all seen that Michael’s symptoms are not stable. Of course he has had it for a long time, and we only see him when he is under a lot of stress giving public presentations. I would still consider it if the DBS failed. I did not enjoy that procedure and am not sure I would want to do it again.
I’m have not been sleeping, so am rambling . My thoughts may be kind of sleepy, but they are just thoughts..
I have found mannitol very good esp for mood. Before taking it didnt care if lived or died. Like you i in my 50's. 3 months in and apathy totally gone( lifted after 10 days). Its a natural sugar and cheap. Try it they say now that it may break down alpha-suclein in brain (spelt that wrong sorry). I get mine from syncoelin.com.
There are Rock Steady Boxing affiliates in Boulder and Evergreen. Contact or go by and get started boxing. I am a coach in Alabama - my husband has PD. The program is changing people's lives, giving them Hope and a community that understands. Your family can participate as volunteers and it can be a Family event. My daughter and I both volunteer. All the best to you. rocksteadyboxing.org/find-a...
Also, have you considered scouring the clinical trials to see if there is one that might work for you? Some of the most promising (IMHO) are reserved for folks in advanced stages. Go to clinicaltrials.gov.
I am in one, trying a new medication that is supposed to treat the disease--NOT the symptoms. I don't know whether it will work, of course, or even whether I am on a placebo right now (everyone gets med eventually) but every day I swallow that pill it gives me an incredible sense of hope and excitement. :o)
A right mess you're in for sure and you have my sympathies. You've had some good feedback and I can only offer a couple of other things. I'd encourage reducing the stress with your work as it really does effect PD, and try to stop worrying about your kids not being "ambitious, hardworking and driven'. There is no doubt in my mind that you have been reflecting just those ideals and they will have absorbed that. Your teenagers may not be showing that now as they have to do the rebelling thing but keep open with them on what you are going through and they'll be fine adults for sure.
I'd also suggest anti-depressants, I have friends who, once they found the right one really got help. Personally I use marijuana. Maybe also look for something else to look forward to, or to put your interests in rather than your high pressure job.
I was listening to “Overcomer” by Mandissa on my way to work this morning and it brought you to my mind. I am just wondering how you are doing today? I am concerned about you and your family.
Hi everyone. I have been not following the chats for awhile because my health issues have been quickly evolving. I was recently tested for autoimmune problems (I have vitiligo on my skin) and they found that I have Anti-Glycine Receptor Antibodies in my blood. This directly correlates to me now, more than likely, having an additional diagnosis of Stiff Persons Syndrome. (SPS); it has very similar symptoms to that of Parkinsons. The doctors are still looking at a few things including doing nerve testing (EMG) and checking my spinal fluid (CSF) for anti-GAD65 antibodies. The best place to research this SPS is in the following place: thetinman.org/.
The question now is: do I have both diseases? Does anyone have experience with this disease?
I hope someone out there can provide me with some guidance.
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