I have brutal fatigue. I am 71, male diagnosed 3 years ago. Have arthritis in my hands, knees, spine. Lots of nausea. I exercise every other day. I have very interest in doing my hobbies, reading books. I talk to a therapist twice a month. Sometimes I cancel the appt, due to depression and fatigue, I get threatened with being taken off the program
@thesecretlifeofparkinsonsКүн бұрын
Sorry to hear that. Have you checked out episode #2 or #15 where we talk about Apathy? Sounds like that vs. depression. Apathy is when you don't care to do anything or show little interest in things you used to do. Here's a quick short from episode #15: kzfaq.infowXRiXbJKHpA?feature=share
@thorarthur66ddzКүн бұрын
Shortly after I got the Moderna Covid MRNA vaccine I developed tremors when I yawn and when I'm sleeping, which wakes me up. The first Neurologist I went to thought it was related to my cervical spine. The second Neurologist thought it was related to carpal tunnel syndrome and ulnar nerve compression, but when I noticed that my left arm wasn't swinging, I insisted on seeing a Movement Disorder Specialist.who diagnosed me with Parkinson's.
@thesecretlifeofparkinsonsКүн бұрын
Sorry to hear that. Glad you went to see a Movement Disorder Specialist. They are the best at diagnosing Parkinson's. Thanks for watching our channel!
@thorarthur66ddzКүн бұрын
@@thesecretlifeofparkinsons Thank you. I learn a lot from your channel.
@johndonaldson5126Күн бұрын
Good episode. I'll pass this on to my PD group
@thesecretlifeofparkinsonsКүн бұрын
Great! Hope they work as well for you as they are for me!
@xjetКүн бұрын
I never realised until watching this that I *do* find it harder to roll over or reposition myself in bed at night. Sometimes these changes happen so gradually they go unnoticed until you stop and think about it.
@thesecretlifeofparkinsonsКүн бұрын
Right?! I didn't think of it either until Melissa mentioned it in class.
@jnm.624Күн бұрын
Interesting... do you have to buy the flat & fitted sheets separately? It appears like you do. So are the pajama top and bottom sold separately also?
@thesecretlifeofparkinsonsКүн бұрын
Correct. It's all sold separately at this point from my understanding (at least that's how I purchased them)
@56deedles2 күн бұрын
I can relate to fatigue and constant changes. Bad nights are the worse!
@Lenteja772 күн бұрын
Do you think if I have DBS I could play golf again?
@thesecretlifeofparkinsonsКүн бұрын
Every person with PD is different and from what I've seen every experience with DBS is different. But its not just DBS, exercise needs to be involved too. But I would like to think that yes, you would be able to play golf again, but I don't think anyone can be sure. Good luck on your journey!
@Lenteja772 күн бұрын
Great news. I really hope this helps
@normanrubenzer2 күн бұрын
this is one of your best pod cast to date with martha. i have been doing reseach on the gut also. excellent job
@thesecretlifeofparkinsonsКүн бұрын
Thanks! Let us know if you learn anything else!
@lauradirico26472 күн бұрын
I have gone to 3 doctors. One said I had a stroke. But I didn't one said I had old legs one said one said I had a pinched nerve. I have balance loss and other things
@thesecretlifeofparkinsonsКүн бұрын
Have you seen a Movement Disorder Specialist? They are a special Neurologists that diagnose Parkinson's and other movement disorders. I recommend trying to find one and get their opinion.
@reub5439evil2 күн бұрын
I wish my movement specialist was like yours. He does not want to talk to me about my PD or the meds or my condition. He works out of the same office as my last MD but it's different trying to talk to him. I am wondering if my age is part of this problem. I just turned 85 last month. I stopped working in Dec. and feel like I am going down hill since.
@thesecretlifeofparkinsonsКүн бұрын
Are you exercising and socializing? That is the key to slowing the progression...at any age. I'm surprised your movement disorder specialist doesn't want to talk about anything PD related.
@LovethChris-zb7py2 күн бұрын
Hello! My husband has lived with Parkinson Disease 🦠 🦠 all his life and it has caused him lots of pain and discomforts which are unbearable. He has undergo so many therapy and none helped except for Dr Madida Sam natural protocol he undergo and after the treatment plans my husband PD 🦠symptoms was all reversed and my husband is now 48yrs and he looks strong, he is healthy and very okay now… All thanks to Dr Madida on KZfaq👍🎉🤗..
@LovethChris-zb7py2 күн бұрын
Hello! My husband has lived with Parkinson Disease 🦠 🦠 all his life and it has caused him lots of pain and discomforts which are unbearable. He has undergo so many therapy and none helped except for Dr Madida Sam natural protocol he undergo and after the treatment plans my husband PD 🦠symptoms was all reversed and my husband is now 48yrs and he looks strong, he is healthy and very okay now… All thanks to Dr Madida on KZfaq👍🎉🤗
@user-gk2qo7tg3u2 күн бұрын
Thats right my shakes bad after workout 30 minutes then ok lreland
@thesecretlifeofparkinsonsКүн бұрын
I experience that sometimes too.
@kathymalmquist9013 күн бұрын
Your podcasts have been so helpful ! Thank you so much ! I wish I had known about the exercise that I would need to do. The Drs just say exercise but they don’t explain the type needed to help keep the progression away. Rock Steady Boxing I found 3 years ago , but really wish I had known about it at the time of my diagnosis back in 2018. 😊
@thesecretlifeofparkinsonsКүн бұрын
Glad you found it when you did! Starting exercise at anytime in your PD journey will help slow the progression and in some cases I've seen some people improve (example: I know someone who had trouble raising both their arms and then being able to fully extend them). Good luck to you!
@jnm.6243 күн бұрын
you have to reinvent a sleep routines & exercise because PD makes it so difficult
@elizabethsky46813 күн бұрын
Woo hoo! Happy birthday to Brian as well!!
@jnm.6244 күн бұрын
Awesome!! & Happy Birthday Brian!! What a great coincidence!! ❤❤
@dollywolf97234 күн бұрын
Let Michael J. Fox know about this. He's got at least 40 more years left in his life.
@danbaker2414 күн бұрын
You mentioned that you had a medication change that helped. Was that a dosage change or a different medication? I relate so much to your dystonia symptoms.
@thesecretlifeofparkinsonsКүн бұрын
Back from episode #5, I was probably referring to my change from Ropinirole (dopamine agonist) to Carbidopa Levodopa. I had to get off Ropinirole because I became addicted to work. Dopamine agonists are known to cause addictions or obsessions...usually with gambling or shopping. But it can be to anything. Anyway, that's when I switch to C/L. Most recently, around episode #106, I went from 2 C/L at four times a day down to 1.5 C/L at four times a day because my arm pain was relieved from physical therapy and the 2 C/L at a time were making me dyskinetic. Hope this helps!
@juliet-m314 күн бұрын
This is great news!!❤🎉😊
@ohblimey215 күн бұрын
I’m GREAT too! GREAT
@John-lt8bh5 күн бұрын
My left hand has the death grip on the steering wheel every time I drive and my right is loose goose.
@thesecretlifeofparkinsonsКүн бұрын
I know how that feels!
@justinmariana125 күн бұрын
The majority of people have no clue what Parkinsons is or what we go through
@JohnMcCreery6 күн бұрын
Bravo!
@justinmariana126 күн бұрын
I have very bad insomnia. I am in bed 10 to 13 hours. Have constipation, bone pain, bad fatigue.
@thesecretlifeofparkinsonsКүн бұрын
I know how you feel.
@lhscatnap6 күн бұрын
❤
@annb56106 күн бұрын
Sounds like driving to the Mayo Clinic 6 hours thinking they have more info....a plan of action and.....expertise.......ended up.....a waste of time
@jhb84265 күн бұрын
Opposite results for me. Just a 2 hr drive. After 3 visits the diagnosed the issue and recommended a treatment. Go every 3 months for a nerve block. Works wonders.
@annb56104 күн бұрын
@jhb8426 That's Great Your Lucky and Blessed! They offered me nothing no plan no treatments no supplements no Patient trials had to practically beg for a telehealth follow up and was rushed off the phone.
@thesecretlifeofparkinsonsКүн бұрын
Sorry to hear that. I hope you found someone that works better for you!
@LoriHanf-f5p7 күн бұрын
You mention probiotics, what should I be taken. At present I’m not taken anything. I was having a yogurt every morning and somewhere i read or someone told me I shouldn’t eat yogurt.
@thesecretlifeofparkinsonsКүн бұрын
Check out episode #94: kzfaq.info/get/bejne/m9aCfpSE0MicoI0.html We talk to a gut health expert who developed her own probiotics. Those are the ones I started taking and I really like them.
@evied.44757 күн бұрын
I sure appreciate your show. It’s so helpful!
@John-lt8bh7 күн бұрын
at 10:52 you talk about probiotics what does it do for you?
@thesecretlifeofparkinsonsКүн бұрын
What I have noticed on the probiotics is that I'm more regular and I stayed healthy during the winter when my entire family was sick.
@Streamliner18 күн бұрын
Great article below
@keitymarley7338 күн бұрын
My prayers are with you all and I know how you all feels, my Dad suffered same illness for 13 years until madida herbal center came to his aid and cured him with their natural PD herbal medicine, Click and search #DrMadida, and let your Parkinson Disease be taken care of and be cured just same way my Dad’s own was taken care of and cured completely 👌👌.
@keitymarley7338 күн бұрын
My prayers are with you all and I know how you all feels, my Dad suffered same illness for 13 years until madida herbal center came to his aid and cured him with their natural PD herbal medicine, Click and search #DrMadida, and let your Parkinson Disease be taken care of and be cured just same way my Dad’s own was taken care of and cured completely 👌👌.
@keitymarley7338 күн бұрын
My prayers are with you all and I know how you all feels, my Dad suffered same illness for 13 years until madida herbal center came to his aid and cured him with their natural PD herbal medicine, Click and search #DrMadida, and let your Parkinson Disease be taken care of and be cured just same way my Dad’s own was taken care of and cured👌👌…
@altusforwomen9 күн бұрын
Hi Jessica! You mentioned that you have a friend in Philadelphia who had just received Botox injections. My movement disorder specialist is in Philadelphia and when I asked him about the possibility of Botox injections for my tremor, he was hesitant/non-committal. So I’m wondering if you would be able to tell me where your friend went for her Botox injections and who performed them for her? I would like to explore this Botox option because I am tremor dominant and my left arm is starting to be painful (due to the constant tremors, irritating the muscles), inhibiting my ability to work out/move smoothly without pain. Thank you in advance for Any suggestions you can offer me about getting Botox in Philadelphia (or anywhere in eastern or central Pennsylvania for that matter)!
@rocksteadyfighter9 күн бұрын
Six months post diagnosis and after trying many different meds that weren't working, my MDS started talking DBS. Me, still in denial, wanted to make sure I really did have PD and not something else so I went a functional med doctor. They did not test me for SIBO but after having IBD symptoms for years, they had me to thru the SIBO protocol of herbs, dietary restrictions etc. After going through that, my meds started working. I am sure that I was not absorbing the meds. I am now almost 8 years post diagnosis and although my PD is progressing, it is slow and still no DBS. My meds work well but now wear off way too fast.
@thesecretlifeofparkinsonsКүн бұрын
That is so interesting! I don't know why SIBO testing isn't more well known. This was the first time I've heard of it and now that I'm doing more research on it, I'm starting to think that people who say their meds don't work or they get nauseated with taking them might have SIBO. Just a thought, but something I want to address with one of the Movement specialists soon. Thanks for sharing.
@normanrubenzer9 күн бұрын
excellent review, this is what pd people want to know.. my wife has advanced pd and she is waiting for the abbie 951 pump to get approved by the fda, well its been 3 years and the rejected it for the second year in a row. this is terriable. there are millions of pd suffers out there. im starting to feel like america is going down hill.
@thesecretlifeofparkinsonsКүн бұрын
I read that the FDA rejected it recently due to an issue with the facility or the device and not the medication itself (which is a good thing). But it still sucks that it's not making it to market quickly because of that. Might be worth checking into Duopa until that new one gets to the market.
@normanrubenzer9 күн бұрын
please do some research on the extra dopamine left in the brain which becomes toxic to advanced pd please check out doctor johnathan sackner berstein he did a podcast to explain his research . check it out. i think you both would be interested. google away. he has a personal freind that has pd and is trying to help any way possible.he is a cardiologist heart doctor
@eithneodriscoll75289 күн бұрын
I totally agree with you both. I had frozen shoulder and plantar fasciitis as did my friend with Parkinson’s. It was definitely connected to Parkinson’s and not just a coincidence.
@thesecretlifeofparkinsons9 күн бұрын
Especially when I know more people my age withOUT Parkinson's and they don't have these issues....but crazy enough, the few PD people I know that are around my age DO complain about these issues. Coincidence? I think not!
@Parkinsonsgardener10 күн бұрын
As one with pd.this is a huge issue with dr'S. DR'S TEND TO HABE BLIEFS EITHER EVERY THING is pd or nothing.totally understand
@tr3vorb43810 күн бұрын
Did Brian’s workout routine change after DBS? What is his routine?
@thesecretlifeofparkinsonsКүн бұрын
I asked him about this the other day and he chuckled and said, "yeah, I don't work out as much as I should". He knows he SHOULD be working out, but doesn't. I think he goes 2-3 times/week.
@user-zh6lw5zy1w10 күн бұрын
I agree with both of you but, I am 72 and had Parkinson’s for 10 years now. I’m so tired of not getting good information from the 2 neurologist I have. I take 2 c/l 5 times a day. Now I’ve how a new problem two times in the last 2moths, l have had the worse nausea and vomiting to the point I could not take any medicine or drink water for 2days. Has anyone you have talk you to had this…?..
@sophiec33339 күн бұрын
About 8 months after I was diagnosed, I started vomiting even when I had nothing in my stomach. It was painful. I was taking 1 1/2 levodopa/carbidopa 3x/ day. My neurologist decreased the dose to 1 levodopa 3x/day, it helped a little but I kept vomiting. On the next appointment, he prescribed domperidone 3x/day which helps for nausea and vomiting (but I think it is not available in the US, I'm in Canada). I still take domperidone 3x/day but with stalevo (levodopa+carbidopa+entacapone) 5x/day. I still have nausea and sometimes I throw up, but it’s a lot less frequent (maybe once every 2 months). I’ve been diagnosed 4 years ago.
@thesecretlifeofparkinsons9 күн бұрын
Has your neurologist ever talked to you about Small Intestinal Bacterial Overgrowth (SIBO)? Check out episode #102. It might be worth looking into. From what I read, people can develop SIBO overtime, especially as Parkinson's progresses. SIBO can affect the absorption of medications, it can worsen gastro issues, and it can cause inflammation and irritability which is exacerbated with C/L. But ask your doctor to see if you can be tested for SIBO. Just a thought.
@user-zh6lw5zy1w9 күн бұрын
@@thesecretlifeofparkinsons no I’ve never heard of that , I will look at the episode now. Thank you very much
@ziontours589310 күн бұрын
😢Since being struck with PD, I've been listening to a lot of podcasts on the subject. I don't remember where it was, but during one talk a doctor was saying how he disagrees with the statement that you don't die of Parkinson's, you die with Parkinson's He claimed, like you, that we would'nt have got the problem if it weren't for the PD.
@thesecretlifeofparkinsonsКүн бұрын
Yes, I remember Doctor Patel said that.
@deborahmueller59110 күн бұрын
I had the opposite situation my orthopedic doctor told me that my pain was due to Parkinson’s, but my neurologist said no it’s not. The issue is the Doctor Who said it’s because of Parkinson’s didn’t think there would be anything for me to do like Physio, which does work for me. This was very helpful hearing you talk about this topic. Thank you so much. I really appreciate you guys.
@gingeemontuoro96939 күн бұрын
😊😊
@thesecretlifeofparkinsonsКүн бұрын
Thanks for watching!
@lizcampbellholroyd387610 күн бұрын
yup me too! It’s been 14 yrs from diagnosis at 50 although I now know my earliest symptoms at 40. Re pain I’ve had plantar fasciitis, back muscle spasms that bring me to my knees, shoulder pain all on the side my tremor started on. 💡
@Lenteja7710 күн бұрын
Los doctores no saben nada de cómo un paciente de Parkinson realmente se siente