About three weeks ago, I was noticing a slight tremor in my left hand, as well as an internal feeling of tremor through my chest area. I figured it was related to alcohol (I like to sip on bourbon in the evenings but had just switched to vodka) or stress (huge life struggles right now) but I did a little googling.... That's when I found out what PD is. Lo and behold, I've been developing symptoms, one after another, since I had a heavy wooden two car garage door fall on my head almost nine years ago.
So I've had the lack of arm swing and a lopsided gait for that long. Fatigue had lasted about a year and then gotten better. In the past two years the fatigue has come back off and on, and right now it's killing me.
In the past few months to years I've been noticing that I've all but lost facial expressions, been wracked with horrible cramps in my foot, hand, and throat of all places, become unsteady on my feet, and about a month ago I was hit with severe depression, but this seems like some kind of total body, mind, spirit and soul depression like nothing else I've ever experienced. My left arm feels stiff and wants to stick by my side when I walk, my voice freezes up frequently while I'm talking, I no longer walk heel to toe but flat footed (which has recently lost me a big chunk of my income) and I'm also experiencing some very disturbing cognitive malfunctions that have me worried.
I saw a FNP the day after I connected all these signs and more with PD but she wanted to test for everything else. Blood work including B vitamin levels all tested normal. She wants an MRI to rule out the brain aneurysm that runs in my family. But already I know I fail all the neurological tests for PD spectacularly. Heel tapping, finger tapping, etc. I'm pretty sure that's what this is.
Any input or advice? Oh, I'm a 46 year old female in Mississippi, just outside Memphis, Tn, and it's nice to meet y'all. =-)
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Stebenjoe
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Nice to meet you too, Stebenjoe! Your FNP (what is that, btw?) sounds pretty sharp. It's a good idea to rule out the aneurysm and all that other scary stuff too. Also, a good bet to see not just a neurologist but one who specializes in movement disorders.
I'm cringing over here just thinking of having a garage door fall on my head!
Family Nurse Practitioner is what I meant. I'm still waiting to see if the hospital will grant me financial assistance for the MRI she wants. Hopefully next week. 😊
I'm the fly in the ointment! I do not believe that medication is the right way to deal with Pd, but it can serve a temporary purpose. It helped me in the beginning, but fortunately for me, I was persuaded by my late wife to start doing fast walking, two years after diagnosis. At that time I was continuing to go downhill, even though I was taking sinemet, which is regarded as the 'Gold Standard' medication for Pd. Let me tell you, there is not medication that tries to cure Pd or even slow down the progression of Pd. That is a FACT!
The only thing that has been proven to have an effect on the progression of Pd is EXERCISE! I do fast walking and others ride bikes. I am sure there are other forms of exercise that affect the progression of Pd to a certain degree.
I am not going to bore everybody, as most of them are tired of hearing my story. So I have put it into my 'Profile' and you can just go and have a look at it and make your own decision. The choice is all yours!
I very much enjoyed your book and have benefitted immensely from it.
On the specific subject of PD and exercise, I have ...
- traded most of my treadmill time for fast walking.
- added open field walking with my strong Golden Retriever at the lead on a 20' leash (9 mos of the year; too hot in the summer in sunny Virginia)
- added routine core (upper body) exercises 3-4 times per week - had been putting this off for years!
- have learned to love rowing, which wakes up every muscle in my body in the first 5 mins of a session.
- no longer obsessively working out rigorously every day. Another lesson from you. Now go for partial routine on the off days. Gives my lower body time to rest. No longer have occasional muscle seizures during the night.
A year and a half ago I exhibited the following mix of PD symptoms: anxiousness, tremors in left index finger, weakness in my left arm (which I assumed was a result of an early life athletic injury), listlessness, foot shuffling, tactile defensiveness (could not sleep with any covers), inability to fall asleep, constipation, "feelings" that I might be headed to balance problems, claustrophobia (had to sit in aisle seats in planes and theaters), inability to stay focused on tasks (hence task avoidance), waking up with goopy eyes and heavy ear wax, etc. Like most older PD victims, I just thought that was part of aging!
I no longer have these symptoms on a chronic basis. I do have ongoing minor teeth chatter to remind that I do indeed have PD. But my jaw is normally set apart, so thankfully I dont really experience this sensation.
I have ditched a small (.5mg) prescribed dosage of Ativan (for anxiety) and having failed to find supplement to avoid being dogged by heavy constipation, I have completely freed myself of this menace by taking a daily dose (800mg) of Magnesium, along with a combo of Colace and Miralax on alternative days.
I also have been taking high daily dosages of Inosine (2g) and NAC (1200 mg), both of which are undergoing national Phase 3 Trials under the direction of Harvard Med/Massachusetts General in the US, as well as 1200mg of CoQ10.
Finally, I participate in a Feldenkrais movement awareness session and have a deep massage on alternative weeks; the former, to develop new movement neurons, and the latter to awaken every muscle in my body that is struggling against the entropic effects of PD. Both have been prescribed by my internist and so are covered by Medicare in the US. (The only thing that my neurologist has prescribed for me the past two years is a daily senior adult multivitamin!)
I have found several positive aspects of having PD. I much more often now pause to smell the roses. I have become much more empathetic to the challenges others face. I still enjoy my work, but it is no longer the center of my life. I limit such activity to about 2-3 hours a day. (As an author and consultant in the field of corporate transformation, I have traded book and report writing to article writing and emails. Skype and GoToMeeting calls have replaced excessive travel to client organizations. I now mostly license my methology to professional consulting firms rather than deliver it myself.)
I have also learned that if I ignore my routine for a few days I can sense the return of the PD "shade" ... the best term I can associate with the disease; as in being possessed by one of Dante's "disembodied souls!" So it has been extremely helpful that my loved ones have been very understanding of my PD-related daily routines.
I hope some of this is helpful to others. Sorry for going on so long.
Hi Bob. I am hearing more and more from people who are taking control of their lives and getting away from the accepted 'normal' approach to dealing with Pd. Keep it up for as long as you can.
There are people out there with vested interests, who want to dissuade others from listening to what we are telling them. It is a free world and we can all do whatever we want. We just have to live with our consciences.
Many people, living in the lap of luxury, think that I am a fool. They are right! I am a fool! Why am I interested in other people's problems? I don't know the answer to that question, but I have a clear conscience, and although I don't sleep well, thanks to Mr P, I have a clear conscience.
That is a lot of helpful information, Bob. Thank you! As I tell people what's going on with me, they all say they'll pray it isn't Parkinson's, but when I read how well many of you get along (granted, with major life changes, but those are not foreign to me already) I don't see it as the death sentence they're acting like. Thank you for that.
That is wonderful news. But be careful. Somebody is going to tell you that you obviously don't have Pd, even though you have been diagnosed with it.
If you stop the exercise your Pd will slowly start to get worse, because walking is not a cure but a treatment. If you keep it up, you will not only overcome most of the more harmful effects of Pd but you will avoid all those nasty things like heart problems, obesity, diabetes and many other expensive ailments. This is not good news to many people, who make a comfortable living out of these problems.
It is your duty to yourself to start exercising and keep doing it until you die!
I first do some leg squats by bending my knees low to the ground and coming up again. I do that 30 times then rest for a minute. Then I do about 10 minutes of jumping like I am jumping rope. That really builds endurance. Then I do fast walking outside for about 20 minutes. I do this routine starting about 10:30 am because this is when I have the most energy. If I do this I have lots of energy throughout the day and my symptoms are almost completely gone. It is a simple set of exercises that really help.
Have patience. Seeing a well respected neurologist/movement disorder specialist should be of primary importance. My family physician and neurologist had to rule out everything else before they diagnosed me with PD. It is not the easiest ailment to diagnose. I had, also, experienced, blunt force head trauma, previously, which had to be analyzed, also. There are other neurological ailments, similar to PD, that must be ruled out. My diagnosis took about six years, from onset of early symptoms. Good luck.
I see a lot of people saying it took year to get a diagnosis. Since I'm in the class of "working poor with no insurance" (although I don't consider myself poor anymore now that I've finally bought a home!) I don't know that I can go through all the medical hoops. That's what I'm afraid of but I'm encouraged by all the information I'm learning here and through webinars from the foundations, etc, that treatment won't be all based around expensive doctor visits and pharmaceuticals, and by the fact that the go to meds, at least at first, are not all that expensive because they've been around for so long.
The generally accepted treatment is levedopa, which you should be able to afford. Given the US medical system seems to exist solely to extract money rather than anything else I would reiterate trying to eat well, excercise and possibly find affordable supplements that help you rather than going on the full treatments at first.
Please try to get insurance through the ACA. If you live in a state that provides Medicaid through the expansion, even better. You are correct in that a diagnosis of PD usually involves a neurologist visit twice a year and many medications are generic. However, some brand name meds and physical therapy programs would be very expensive without insurance. All bets are off if ACA ends, but for now it's available.
I had tried to get insurance during the open enrollment period this year but it was impossible for me to come up with the premium before open enrollment closed. I had lost a lot of income over the winter, just part of my business, and when I picked up enough work in spring it was too late. Although I could afford the insurance premium now, the only way enrollment would open up to me before next year is if I experience one of their list of major life changes. The only one of those that's even possible for me is divorce.
So if I want insurance I can afford, right now, I have to divorce my husband. I don't think he'll go for it.....
Commiserations - on the face of it sounds like you have this - but you have at least come to the best place (IMO) for support for PD. I would recommend you go through some earlier posts about what others are doing to reduce their symptoms.
Do as much varied exercise as you can, eat healthy stuff ( Salads, Kale, Coconut oil) - certainly avoid pre-processed junk food.
Mannitol is definitely worth trying especially if you are constipated.
Thank you! Already my body has been telling me it suddenly loves salads, so I'm thankful for that. I had spent two years eating mostly dollar burgers from McDonald's while living on couches to save up to buy my house. Love me some cheeseburgers!!
I will look into the mannitol, because yes, that Is a huge problem for me and so far I just don't seem to be able to correct it with diet alone.
Seems to me like it is coming on a bit too fast. Most, if not all the symptoms truly are PD symptoms, but that does not mean they are the result of PD, they could be, but to assume they are and ignore the incident with the door could be dangerous. Your health advisor sounds very smart. Plus many PD symptoms are also shared by other deceases commonly referred to as a group as " PD Plus+ " so it takes time and expertise to diagnose and then often wrong. They say the only way to be sure is if the PD meds work. Confusing isn't it. At this stage we will hope it is PD. I bet you are really confused now, sorry but PD is not the worst possibility. the Plus + does not stand for better.
Oh by the way, John does not walk in any other Parkies shoes. His assumption is that if it works for him it will work for every one. Not true. His advise to not take medication that has been prescribed borders on careless and malicious and in Canada could easily lead to charges if shown to have caused death, which it easily could. That should raise some hair on the back of a neck or two. Johns mission from God is in good cause but just like the Blues Brothers it could turn into a trail of destruction.
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