Feeling alone?: Is it me? My PD is... - Parkinson's Movement

Parkinson's Movement
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Feeling alone?

Stevenmast
Stevenmast

Is it me? My PD is overwhelming me! I have a family but it doesn't seem to help. I saw my neurologist the other day for the first time in over a year. He said" I'm Amazed that you are doing so well 10 years in". I reminded him that I just took my mucuna an hour ago but I'm glad you see it that way. Perhaps I can go two years before my next visit because I don't come away with much. As all you mucuna users know all too well we are on our own at least that's the way it feels. I have never been to Italy maybe it's time to see doctor C? Thank you to everyone that posts it is extremely helpful to me and much appreciated but still overwhelming!

25 Replies
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I feel much the same way at times. The Doc sees one for such a short period of time, and PD symptoms are notorious for waxing and waning. Some days, my balance is way off, others, not as much-as an example. Because of the numbness in my face, that gives the mask like Parkinson dull look, I purposely overdo facial expressions, like smiles, around others. I purposely try to walk as smooth as possible, even though it's not my normal way of slow, stiff-like "shuffling", when I'm out and about. On the outside, I can fool people, into thinking I'm normal, which is what I want, for as long as possible. I really don't care to talk much about PD with most people, because it is human nature to put labels on others. That being said, underneath it all, PD is taking it's toll with me. It reaches a point with some people, where it becomes an insidious disease. My autonomic system is now affected, so I have trouble with swallowing, orthostatic hypotension, slow digestive system, unable to come up with the right words when speaking, problems. These are not readily noticeable, at first, but have caused me problems at times. If they aren't bothering me a lot when I see the doctor, for such a short visit, and it's not too noticeable, I sometimes wonder if the doctor even believes me; however, these are real problems that I face, and many times I feel alone, that nobody around me really understands that, at times, I have been overwhelmed by something really bothering me, and, seemingly, others not really understanding. So, yes, we are on our own, and, actually, the people that really understand, I have found, are people who have PD themselves, and they do know what I'm talking about. This blog/forum is very helpful to me. I can relate to others with similar problems, and it makes each day a little easier to deal with, when I know that somewhere, somehow, somebody, does really understand how I feel. I hope you are feeling better, now, and this "Parkinson's Movement" blog/forum will help you, as it has helped me! Wishing you only the best! Take csre, and take each day, one day at a time.

Nitro53
Nitro53
in reply to ddmagee1

Well said, my feelings exactly. What we can’t conquer we must endure

Stevenmast
Stevenmast
in reply to Nitro53

Thank you!

Stevenmast
Stevenmast
in reply to ddmagee1

THANK YOU!

AmyLindy
AmyLindy
in reply to ddmagee1

Wow, that is so raw and real and lovely. Make it a special day, DD. You have validated so much right here for so many of us.

You, no- We, are not Alone.

ddmagee1
ddmagee1
in reply to AmyLindy

Thank you for your compliment, AmyLindy! I do appreciate HealthUnlocked.com.

The only thing I get from my neurologist is my prescriptions. I pretty much tell him what I am doing and what I want. He even acknowledges that I am up on things that are new to him. I live in a rural area and he is an hour closer than any other specialist. He's ok though.

All that is to say that staying current with a neurologist is a good thing. There may come a time when you want a prescription for something old or new and you don't want to have to wait months to get into see someone new. Why have to break in a new doctor unless there is a compelling reason? I recommend you stick with yearly appointments, that keeps you current, just in case.

If you have the ability to go to Italy and see Dr. C, go for it. It sounds like you might be a little depressed or maybe anxious? B1 has been helpful for me. Among other things it has alleviated some anxiety.

You're not alone.

Thank you! Did you go to Italy to see doctor constantini or did you do it via email?

Email and trial and error.

Can I ask you what dose and frequency you are taking?

I give myself 80mg IM injections twice a week.

Are you only taking mucuna?

Stevenmast
Stevenmast
in reply to Astra7

Yes! 3/8 of a teaspoon or 1.1 grams lasts roughly 4 hours

You read my mind. Or something like that.

It is common for PWP (person with PD) to isolate. We feel different and self conscious. Apathy is also part of the problem. The desire to isolate oneself is reduced when properly medicated. Exercise helps feeling better and when we feel better we are more incline to share with others. A determined effort to maintain a positive mindset is important. Then we must avoid or reduce stress as much as possible. These measures will alleviate symptoms and help you feel better about yourself and reduce the desire to remain isolated or increase the isolation. I was on Mucuna for 2 yrs and, in hindsight, I was not taking enough to control my symptoms optimally. When I tried to increase the doses I got side effects so now I am on Sinemet, Selegiline and B1. Finding the correct medication and the right dosage takes a focussed effort and a lot of time. It is the foundation to feeling better.

Yes, we are isolated except for family and PD group. My hubby does not talk to people at church about PD, our only outing. Some know, not many. One friend died from a fall due to it and you could really tell he had it by his vague face. Don't know what meds he took. I have Fibro. and use a cane sometimes when pain or balance is difficult, plus fatigue from active Epstein Barr virus, depression and med. causing late onset diabetes. So, we are quite a pair. He quit Resigiline or Seligiline, due to unexplained falls so now just takes Sinemet at night. I've tried starting him on B1 but he forgets. We just have a terrible time with apathy. In our 70's but my mom was much more active at this age. Died at 89 by a stroke I believe caused by a. med. a blood thinner. She was mowing her lawn the day before having survived 2 different cancers, leg and lung. My siblings died in their 50's...sudden heart, and cancer. I take Provigil. that helps with daytime fatigue for awhile with my pain med. and others. Time to do something. Bye for now. What is Mucana? I've probably asked before.

Hidden
Hidden
in reply to grandmama16

grandmama16,

It might be worth mentioning to you that Dr, Costantini has conducted minimal research on the effect of B-1 / HDT in Fibromyalgia and other diseases where fatigue is a major factor. He has had good results with the patients he has treated.

Here is a link to one of his studies on the subject :

ncbi.nlm.nih.gov/pmc/articl...

Perhaps if it works for you, it will give you the energy and incentive to help your husband to remember to take his also! Drop Dr. Costantini an email to get any questions answered regarding B-1/ HDT and fibromyalgia or PD!

Art

Sounds like my wife and myself! We make quite a pair, with our assorted ailments. I'm the one with PD. My wife has severe diabetes, heart failure and metabolic syndrome. We are in our 70's, and making the best of each day! We do enjoy our church activities!

Nice to know we have things in common. We do feel alone...do not go out with friends tho once upon a time we were part of a lot of things. We do a tiny bit, now and then. The biggest is my Carmelite group which met today, once a mo., with lessons about St John of the Cross which I enjoy, then Divine Office in church, social time back at meeting hall, each bringing treats, and a general meeting which was short. I could barely carry my bags to the meeting and to car, and back home. During the first half of it my head felt like my brain was sloshing but taking afternoon meds helped. Was wiped out at home? Tomorrow I'll be helping with a funeral and won't have anything left in me to do more decorating at home...lights outside and tho cold, weather is mild, easier than freezing. Maybe I'll try.

I take 40,000 units of Vit D on Sun., a multi during the week plus B12, magnesium and Quonol for cholesterol. I might try B1 with my husband. Maybe it'll help with energy. Are you trying it?

I need to try B-1. I am taking B-12, multi, and Vit. D. I have been diagnosed with persistent anemia, for several years now. The doctor has me on iron for that; however, fatigue can be a real problem for me! Just keeping up with chores at home, and taking care of my wife, who is in heart failure, is about all the energy I can muster these days. I'd like to do more volunteering etc. but it's just too exhausting to have a full schedule.

Grandmama16 that’s a therapeutic dose of Vit D! Is it prescribed and labs monitored? I took it under a protocol for a short while and now on maintenance.

10 years? How many years on Mucuna ? It’s overwhelming and isolating. The more obsessed I get w research/ forums the more behind and overwhelmed I feel. Funny- it’s like I can’t get enough to satisfy- as there is no real answer, just theories and anecdotal testimony. The more I dig into my disease, the further I am from family and certainly friends. I find myself getting sucked into an obsession of information /via technology. Today, I shift course. But first I chime in w you: overwhelm, yes and neurologists, yes - lackluster !

Stevenmast
Stevenmast
in reply to AmyLindy

To answer your question I've been on mucuna roughly four years. Since I was formally diagnosed 7 years ago at 50 years old. I worried everyday and truly didn't want to believe this disease was happening to me. I became obsessed hoping I could treat myself naturally always hoping still to this day I'm going to be different! I must admit my green tea mucuna Mannitol Witches Brew has been working for me almost every time as long as I'm discipline with what I eat and when I eat. That said, my three children have suffered because I've been so self-centered and not realizing 7 years have gone by and I haven't been there for my kids emotionally too busy trying to figure out if I'm going to make it to 60 years old. I am now aware of it I now and I'm slowly trying to mend the damage that I have caused. I am certainly not giving up just perhaps taking it down a notch and more careful what I say in front of my kids. Today my two girls are 21 and 18 my son just turned 16 on Monday. At the end of the day they're teenagers at least they are now and just want to be happy go lucky like we all we're at that age. Mix work into the equation just makes it more interesting! Never give up! Thanks for all your intuitive and Sound Advice! Steven

AmyLindy
AmyLindy
in reply to Stevenmast

I can identify. We are not alone. 🥊

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