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Parkinson's Disease Tulip


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Unread 02-16-2013, 03:42 PM   #1
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Default Parkinsonism

New member.

In early October I was diagnosed with Parkinsonism.

Last May/June I was able to hike/backpack five to ten miles with elevation gains as much as 1000 feet+. Today I can hardly walk two blocks.

Late August I had to take a medical leave of absence from job due to inability to carry out my duties. Subsequently job officially terminated. Unable to drive.


Nerves feel on edge, like burning, for lack of a better word. Entire body inner and outer trembling. Numbness in body - hands, arms, legs. Muscles hurt/tingle, sometimes quite uncomfortable.

Constant varying levels of dizziness/lightheadedness, usually worse when I stand up from sitting, but also while sitting or laying down. Head with inner trembling, feels like it is going to explode. Palms of hands sensitive, fingers hurt when using. Pain in ears, fullness, throbbing, sensitivity to noise, constant ringing, sometimes hearing strange noises. Light pain in eyes. Pain in face. Sometimes, very short lived dull headaches above and behind eyes. When walking, feel like my legs are rubbery. Hands and feet often cold. Big toe pain. Mind racing.

Brain fog: Cognitive problems. Inability to concentrate, focus, hold on to a thought, express myself, speech problems, slow processing problems, find a word. Example: Getting dressed, take out a pair of socks, then take another pair out.. Doing a task that involves two procedures, turn around and forget what the next procedure is, etc. Difficulty making a decision or solving a problem. Mentally it takes longer to decide what to wear than physically getting dressed. Unable to read. Watch TV, but stare.

No motivation. Look at a task and unable to follow through, forget I want to do it. etc. Occasional (not often) what I call, walking blackouts. Brain shuts off, unaware of being conscious. Of short duration. During one of these occurrences, fell down stairs, hit head but not badly, and not hurt. Only occasional nausea. Use spoon to eat, usually evening meal. By end of day difficulty coping. Tire easily. Sleep averages six hours. Sometimes breath through mouth, not nose. Occasionally sinuses feel like they are draining, but unable to. Stress a big problem.

Unable to be in a situation outside the home such as going to church or library, or store. Getting to the point that I wonít put myself in such a situation. Exercising a problem. Do leg exercises while sitting in bed, when motivated..

I live in a converted garage. It gets boring. I am sedentary and donít exercise. There is a bone builders group half a block up the street, but I havenít made it there, yet. There are not any support groups here in town. My days arenít always that bad, though. They seem to get worse as the day goes on. My largest complaint is the dizziness/lightheadedness that doesnít seem to go away.

I have been on two other meds before the one I am on now, but they made my symptoms worse. I am now on Caridopa /Levodopa 25/100 mg - 4 per day. It has taken me nearly three weeks to work up to this dosage because of my sensitivity to medication.
I had one really really good day this week, one half good day, and now am back to the usual. Perhaps I am not giving it long enough to work.
I am waiting to have a neuro (something) tests that takes about three hours. It takes up to six weeks for them to call me to set up an appointment. Then I will have to wait however long after that for the actual tests.
Well, this is already too long. I have been writing this over a period of a couple weeks so it will make a little sense.

I have been reading the threads posted. They are informative. However, my brain just doesnít seem to comprehend much of it.
At times I feel that the above is psychological. I look at the above, and it appears not to make any sense to somebody reading it.
Thanks for listening
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Unread 02-17-2013, 03:56 AM   #2
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Thank you for your post. I'm sorry to hear of your problems.

I'm not a doctor.

Have you been tested for Lyme Disease? IMHO, your location, Vermont, activities (hiking, backpacking) and symptoms (see
http://www.nhs.uk/Conditions/Lyme-di.../Symptoms.aspx ) suggest this is worth discussing with your doctor.

Born 1955. Diagnosed PD 2005.
Current meds: stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
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Unread 02-17-2013, 04:33 AM   #3
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Default They fired you? Did you have disability Insurance?

If your symptoms are developing that fast then it could be lyme disease or Supernuclear palsy. It doesn't matter which because I suppose you lost all health benefits when you were fired. If you know your employer was aware you had been diagnosed with PD, you can consider a lawsuit according to the Americans with disabilities act. Talk to an attorney. Most will not charge for a first visit and bring a friend to be your interpretor. With Brain Fog You need someone along who knows what questions to ask and who is looking out for your best interests.

If you at least get disability insurance you will be in a better place to be a medical consumer. Independent ability to provide your own healthcare gives you power. Government sponsored healthcare puts you below poverty level and takes away your power. You are in a horrible situation. I am sureyou are doing the best you are able to. Will keep you in my prayers.

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Unread 02-17-2013, 07:59 AM   #4
Aunt Bean
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I would definitely be checked for Lyme disease. I was bitten by a Lyme tick many years ago in the leg. Dr checked me on vacation...said yes definitely a lyme tick bite ...did round of antibiotics and said to have doctor give one more round when I got home...that doctor said he saw no sign of anything and would not do it. After 2 weeks got weird tremors in the leg/ tingling burning...felt bad. Another doc gave antibiotics and it all went way. A nurse friend went undiagnosed for a long time and ended up loosing her job and bedfast til they found out what was wrong with her....it was a long recovery time!
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Unread 02-17-2013, 08:06 AM   #5
Bob Dawson
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Originally Posted by Israel View Post
New member.

In early October I was diagnosed with Parkinsonism.

Last May/June I was able to hike/backpack five to ten miles with elevation gains as much as 1000 feet+. Today I can hardly walk two blocks.

Late August I had to take a medical leave of absence from job due to inability to carry out my duties. Subsequently job officially terminated. Unable to drive......
I donít want to alarm you, but I think you should ring a big bell and call for help and draw attention to your condition and challenge the medical profession to find out what is going on. The speed of onset you have suffered is spectacular. Who did the diagnosis? A real specialist? You need a very strong Second Opinion.

You live in Vermont?
Call Jean Baker at the American Parkinson Disease Association's Information and Referral Center, located at Fletcher Allen Health Care in Burlington. Jean is an experienced Registered Nurse, (American Neuroscience Nursing Association) who works hand in hand with the Vermont Chapter of the APDA: 802-847-3366, toll free 888-763-3366 or by email at parkinsoninfo@vtmednet.org.
She is not a doctor but she is a specialised nurse with infinite front-line experience. The doctors take her calls, if they know what is good for them.

Lay it on thick and heavy; declare that you urgently need help Ė ask for help - that you have discussed this on-line with knowledgeable Parkinsonís people, and we are alarmed at the speed of the deterioration of your condition, and we want your individual case to get attention of the top experts. Forward this thread to her if you want, just do what you have to do to get the machinery of health care working.

This is not for a regular doctor or even a regular neurologist. You need an opinion from someone highly experienced Ė a movement disorder neuro specialist; with experience in dealing with unusual Parkinsonís; and who also could bring in a Lyme Disease specialist. (I agree with above posters that it sounds like Lyme Disease)

Tell Jean Baker that you were referred to her by Parkinsonís people at a major international Parkinsonís Forum; and we are requesting her assistance in getting top level treatment for you, as the complexity of your symptoms and especially the speed at which they are developing is causing us all alarm; you need more than the average ďswallow some levodopa and come back in 4 months.Ē If this was ďordinaryĒ Parkinsonís we would not be so insistent; what you have is moving fast in multiple directions.
But start by calling Jean Baker. They are open from 8 a.m. to noon weekdays.
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Unread 02-17-2013, 11:07 AM   #6
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Thanks, all, for your replies and your time. I am so grateful that you really care. I am quite emotional regarding your replies. I was paranoid that I wouldnít receive any.

I am sitting here trying to articulate my responses to your posts. It is difficult for me to gather my thoughts and put them into writing. That is why it took me so long to write my thread.

As I have said, I had one super good day this week. Thatís certainly better than none. I can be grateful for that.

I will explain further regarding Lyme.

Johnt, I have read the link you gave me. Thanks. I have been tested for Lyme Disease. I donít know what IMHO is.

Dianna Wood, I donít know what Supernuclear palsy is, but I will inform myself regarding that. I wasnít fired from my part time job, because my medical leave had expired. I still have the option of going back to work. I now have no intention of going back due to the stress it would create. I feel comfortable with my decision.

I donít receive disability insurance. I am retired and have SSI and a pension. Medicare isnít really much help. My finances are precarious, and the co-pays are not helping the situation. I never had a credit card until after this PD thing started. It disturbs me that I have resorted to using it. Soon it will max out and then, I guess, it wonít matter. I have applied to two hospitals for relief of some sort, but itís been about six weeks and no word from them. That doesnít include any doctor bills separate from the hospitals.

I have applied for some type of help regarding my mortgage, but was told my income isnít enough to carry the assistance. What it comes down to, is, I either earn too much money, but not enough to pay my bills. Every time I see a doctor, I worry about what it is going to costs this time. I suppose the house has to go, but Iím not ready to deal with that. Thatís another matter that I donít care to get into. Thanks for keeping me in your prayers.

Aunt Bean, thanks for your reply. See below regarding your statements.

Bob Dawson, thank you for such a long reply. I certainly will follow through and keep you all advised whatís going on. This will take some effort to do.

I notice that you are from rural Quebec. My Mom was from St. Chrysostome, Quebec. My Paw from Ottawa.

I am going to attempt to put this in outline form.

Neurologist is in a major teaching hospital, doesnít believe in Lyme. Dxd Parkinsonism.
GP doesnít believe in it. Sarcastic reaction from him. I told him about the problem in my groin, but didn't think it was serious enough. No longer my GP.
No Lyme specialists in my area. Closest about 70 miles away.
Saw FNP in town who is educating herself regarding Lyme. Had tests does. Came back negative. On first visit immediately put on Doxycycline Monohydrate 100 mg, but couldnít tolerate the upset stomach.
Saw her last week regarding tests. She will see me in a couple weeks to see if I respond at all to the Sinemet. If not, possibly Lyme. Or, something else.

While at FNP, last week, she checked me for pain I was having in my testicles. (My Paw had testicular cancer.) She said possibly two inguinal hernias.
Will see urologist tomorrow. She had the appointment before I returned home.

I didnít mention this in my original post due to the fact it was too long to go into. I hope that I haven't misled you. Thanks for your patience.

I am close to an hour and a half to compose this, I think.

I do have to say, I suppose, that things could be worse. However, there are occasions when I donít think so.

I still don't understand why this doesn't show up on the new posts section. Am I missing something? Any thoughts?

Again, thanks.
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Unread 02-17-2013, 12:05 PM   #7
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Heart Israel

It sounds like you have an unusual case. Which means you need to be the most powerful advocate for yourself. Contact Social Services in your county. Talk personnaly to the editor of a local newspaper to write a story about the conditions you are forced to live in. If your neurologist works at a large university, contact the Director of the Neurology Dept. and explain that your neurologist is not helping. Ask if a student interested in neurology could work with you. The interns have more leeway with funding and time to try more testing. Be the loudest greasey wheel oout there.

I have been where you are. I saw a department directer of a major movement disorder clinic. I was told by this man after a diagnosis of Paralys Agitans for over 10 years that I did not have PD but had delayed stress syndrome. The doctor talked to my husband but would not answer me why Sinemet was successful in treating my symptoms. My regular neurologist, maybe too awed by the title of the consultant he sent me to, accepted the consulting neurologist, and would only allow mw a second opinion. I went to a former neurologist I used to see at the Mayo clinic. He suggested a DNA test. The only other evidence I could get was to fly to either Mt. Zion in New York or Los Angeles in CA.to have an FDOPA Scan. I live in MN. Fortunatly my ex-husband had enough frequent flier miles to get me a round trip ticket to New York. I had Both tests which proved the consultant wrong. The DNA test showed 2 mutations in my Parkin gene, The F-DOPA scan prooved my brain was failing to uptake dopamine. I wrote to the consulting director of the test results and his responce was to insist I have his clinnic perform a MRI. After that he insisted I allow his clinic to try me on different meds. Knowing this could take forever, I contacted a National Parkinson's advocate group that gave his name out for DBS surgery. The director contacted him. He met me one more time but still would not allow his OK for the surgery. He sent me to anouther location who had a surgeon who could do the surgery. My neurologist advised against the surgery but allowed me the final decision. I had the surgery and was able too drop the amount of Sinemet I take to 1/3 prior to surgery. I know it helped me.

Persistence, creativity, and Faith that you are the only one living in your body and knows what it is feeling are the strongest tools in your tool chest.
You make use of these and miracles can happen. It is hard to be forced to use them when you are depressed or feeling hopeless, but apply them and you may know yourself better and strenghthen your understanding of your brain.

Best of luck,
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Unread 02-17-2013, 12:41 PM   #8
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Thanks for your reply.

I have printed your post, and also that of Bob Dawson.

Right this moment reading the posts that I have printed seem so overwheling. I need this extra push and encouragement. I feel as if there is a cloud pushing on my brain and the effort to follow through on the suggestions overpowering.

I have to think about this, digest it and motivate and carry through.

Thanks to both of you.

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Unread 02-17-2013, 08:49 PM   #9
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Default generosity

I am always awed by the generosity of the people on this forum. And best to you, Israel
In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices.

~ Jean-Martin Charcot

The future is already here ó it's just not very evenly distributed. William Gibson
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Unread 02-18-2013, 10:58 AM   #10
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Default possible underlying b12 deficiency

Parkinsonism can arise from undx'd and masked b12 deficiency.

Watch this video http://www.youtube.com/watch?v=BvEizypoyO0

and order these specific tests: serum b12, MMA and homocysteine [simple, cheap blood tests]. The strange sensations/pain, numbness, weakness and brain fog point to possible b12 deficiency, easy to rectify. If this is the cause, it will take prolonged but cheap treatment to reverse nerve damage.

Last edited by Muireann; 02-18-2013 at 11:08 AM. Reason: more info
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