Weekly Check-In Jan 20-26, 2008
 

Hi Everyone..Not much going on with this cold weather..I did work out in the yard a couple of the nicer days this week..It supposed to be cold all this week

I went to my support group this morning, and we had a lawyer who spoke that specializes in estates, long term care, living wills, etc..Not something that any of us like to think about, but something very important to address, in the event that something happens, or we get too ill to take care of ourselves..He was very informative and at the end said that he would provide services free of charge to those who needed help, but couldn't afford the services

Ive still been feeling very good, and the dystonia that was plaging my right leg and foot, is just about gone..It flares up once in a while now, instead of everyday..My Chiropractor gave me so stretches to do, and I just started doing them, so I will see if it has any effect on it..My gait has improved remarkably..The usual problem with my gait was the toe touching the ground first instead of the heel..Now my heel has been touching the ground before the toe, there for improving my gait..Pd hasnt been as much of an issue as it was last winter, and Ive been reflecting back on the past few years, and it seems since I started the DM almost a year ago, I havent had anymore strings of nasty days, and as a matter of fact Ive only had a few single bad days since..I ran into a friend who I havent seen in over a year, and he said that I looked alot better than I did the last time he saw me..He said that the last time he saw me on a regular basis, I didnt look good..Whatever it is that is attributed to the way Ive been feeling..Its doing a good job..Ive got no complaints

How was your week?

Hi Steve and all
 

It is COLDdown South! Now, to you guys in the upper Midwest, Norway, and other regions nearer the poles, 22 F in mid-January may seem to be a warm spell, but here it is pretty unusual. If I were to tell you that temperature is predicted to be reached for only an hour or two this morning just prior to sunrise. What we canlook forward to is that it will be sunny and about 50 F by 3:00 this afternoon. There was actually a little frozen precipitation Friday, but no accumulations.

I saw my neuro Friday morning and he continues to be delighted with my lack of progression. I suggested to him that I might be slightly undermedicated and suggested adding another sinemet CR each day. He recommended that I not, since he feels that the question of toxicity of any excess dopamine generation has not yet been settled, and he subscribes to the "if it ain't broke, don't fix it" philosophy.

Steve, it was great to hear about the progress on settling your mother's estate. One more stressor out of the way! Also, I am most gratified to learn that you are doing so well physically.

When I saw the neuro, a physician's assistant trainee was observing, and the doctor described my use of DM as "Dr. Smith's own neuroprotection trial". Of course I felt compelled to describe the whole LDN-DM anti-inlammatory story to her. That appointment turned into one of the longest I've had with this doctor because of my long-windedness, and possibly because the PA trainee was young, female and easy to look at. Enough of this!

Hope everyone has a great week.

Robert

good morning
 

I too am doing well, and am feeling like I am in my own home now that I know where MOST of my stuff is. Yesterday I ventured out on my own and got a ton of little things done. It was snowing like crazy which worked in my favor as no one else wanted to go out. The stores were nearly empty.

The weather is dropping down below freezing for most of this next week. If the ground freezes we'll probably get a big dump of snow. Whoopee!!!

Well, no news is good news I've been told -and I have no news. Glad to hear that both Steve and Robert are doing well. DM does nothing for me. I really wonder if we have the same disease, or if a whole variety of brain malfunction just got thrown into one pot? I guess we won't know the answer to that until we cross the big divide. STeve, you are right, we do need to have our travel papers in order. I have given two of my children POA's and in Canada you can have a legally binding Representation Agreement. I have not done my Will yet. I did plan my funeral though and gave a copy to each of my kids. No one commented so I suspect they weren't quite sure how to react. I also wrote letters to my grandchildren that were sealed up and to be delivered on their 16th B-day. I enjoyed doing that. Who knows what the future holds?

Robert..

Its good to hear that you are still doing well..I recently switched from brand name to generic Sinemet CR, because I couldnt get the brand name from any of the Pharmacys here..:confused:..It seems to be doing the job

Rosebud..

Sounds like you are finally getting settled in..Moving is a major pain..Im thinking about selling this house, and getting something smaller..The thoughts of moving are a nightmare!..Good to hear you are doing ok

On the DM..All I can say is that last winter I was heading downhill, and the progression was very noticable..I was having strings of nasty days, and my balance was going south, and it stopped after I started the DM in March..I had a med change from reg Sinemet 3x25/100, to Sinemet CR 2x 50/200, and started seeing a Chiropractor around about Aug/Sept, and began to feel even better still..My symptoms are predictable now..There have been so many subtle improvements, that I wouldnt know where to start the list..The people who know me well have noticed it too..I am not going to pop the cork on the champagne yet so to speak, because I cant deny the fact that I still have pd, and its potential to further disable me is very real..More time will tell the story, as it always does, and always will

Good evening , it`s my best time of the day !
 

Hei-
I should have gone to bed , but I do not. There is so many things I SHOULD have done, what do you do to bring up yourself when you know the things you do are not good for your health ?
The weather has been nice for some days, how can I force or trick myself to go outside ?
I need some harsh parents in my life. It must be the medicines, sometimes I think , if I stop taking it, maybe I will be normal again. I am double, and so is the world around me.
The good news this week is that my children are caring for me -, and my daughter witch turned away from me ,has changed , - we have been talking and I understand her situation. She have no time for me, caring for her 2 children, working as a counsel . She is a very good mother, and she does the right priority with her time, life goes on around me, thank Good for that.

My friend who has cancer is now very tired hope to live some weeks, told me she would like to travel to Nice, just sit in the sun ,listening to the sounds around her on the terrace , the birds ,the wind, people walking. She regrets many things in her life about the topic, not listening to her heart and the world "now , I will not ".

Next week I will do nice and healthy walking ,try to be glad and optimistic.
Thank you for listening.-

Annelise:Viking:

Please explain "DM". I faintly remember something about this, but don't remember exactly what. Thanks

DM is the abbreviation I use for dextromethorphan
 

It is a drug most commonly used in cough medicines; an "anti-tussive". It is closely related to another drug, naltrexone, which was used to help persons with heroin or morphine addiction break the addiction. Naltrexone, and apparently, "DM" are powerful blockers of certain brain receptors which mediate the pleasurable effects of both our normal, endogenous opioids or "endorphins" (endogenous morphines) and the opioid drugs morphine and heroin, which are derived from opium.
Several years ago, a Dr. Bihari in NY began treating persons having various diseases, cancer and chronic inflammatory neurodegenerative diseases, including multliple sclerosis and Parkinson's disease with low doses of naltrexone. Most of those treated experienced improvement or arrest of progression of these conditions. All of this is available at a website, LDN.org. LDN stands for low-dose naltrexone.
I first learned about LDN from a member of this forum, Ashleyk, in 2002 and was interested in trying it. I became less interested when I realized that a prescription was required for naltrexone, and my neurologist was not enthusiastic about writing one for me. The same year, I read about research by a Dr. Hong in North Carolina in which he discovered that both naltrexone and dextromethorphan, at extremely low concentrations, strongly inhibit the inflammatory response of cells called microglial cells in mouse brain preparations. I also knew that post-mortem brains of PD patients always showed extensive "gliosis", the inflammatory activation of these microglial cells in and around the substantia nigra as well as other parts of the brain.
Based on this and the fact that dextromethorphan can be readily obtained over the counter in cough syrup, I began taking 4 to 6 mg of DM each night at bedtime. I chose this approach since this is the dosage regimen recommended for naltrexone. This amount of DM, many times lower than the amounts recommended for treating children for coughs, is most readily measured in the very dilute pediatric preparations such as Pedia Care Long Acting, in which the concentration is 7.5 mg per 5 milliliters, or one teaspoon. The amount I take is one-half teaspoon each night.

Robert

Steve,

I'm glad to hear you're doing better. I think once the estate thing is completely settled, you'll do even better!

This week hasn't been kind to me. The addition of a nice head cold and canker sores, which I get every time I get a cold, made things worse for me. The fatigue finally got the better of me, and I crashed Thursday night. I didn't even log into school. I became a couch vegatable and watched the tube for the evening. That night, I slept the whole night (Yippie!) and actually felt pretty good Friday morning. I was still tired, but much more alert. It's hard to believe how much a good night's sleep helps.

Friday started off okay, but ended up nasty. I'll post about that incident in under another topic.

John