Stanford Plasma Study Patient #1 report

[NanCyclist]

I'm finished with my infusions at Stanford and have taken the first two batteries of tests that signal the end of the study for me. I take the last tests in mid-March and then wait for possibly two yeas to hear the results. As this is a Phase 1 study, there is a LOOOONG way to go. To facilitate communicating with many people, I wrote essays on my experiences, before and after the infusions, and posted them on my website: nanlittle.com. Please feel free to ask questions.

[Fredzu]

Thank you, Nan. I see in your face a beaming glow. Is this the plasma?

I don't think so. I think from inside you.

FJohn1

[NanCyclist in reply to Fredzu]

Thanks Fjohn1. The photo was taken before the study. I don't know how to make it smaller.

[BUZZ1397]

Ah, you are so fortunate to have productive cells inside you producing levodopa as you sleep after so many years of living with PD. I've just been diagnosed for going on 3 years and cannot remember the last time I was able to sleep all night. I'm awakened by tremor, forced to medicate. I miss that feeling like I might still be a bit normal again after having a good nights sleep of 7 or 8 hours and rising with no tremor. Thank you for following up with your essay about your experience, how the infusions have lifted much of your symptoms. That is wonderful Nan. Got my fingers crossed that the benefit is permanent. I think I admire you.

[Hikoi in reply to BUZZ1397]

Buzz

I didnt realise you had only been dignosed three years. I am sorrry to read the tremors are so bad. I know exactly what you describe and yet some days i can sleep well. I have found that the more levadopa i have the less i sleep. There seems to be a critical point with my meds which if i pass it i get worse. Last night i had the best sleep in ages. Im sure it was because i had no levadopa after 7pm. It seems when i take it before sleep i wake up when the next dose is due, if i go to bed in an off state i stay asleep.

I dont know if this is true for others but it is what i am noticing. I do think people sometimes are treated to control what they think is the disease but actually it is the up and down of the drug effects. It becomes a vicious cycle.

But then some people have really dibilitating temors quite quickly.

[BUZZ1397 in reply to Hikoi]

I have considered what you wrote and it is true I have increased ingestion of L-dopa lately by supplementing my Sinemet with natural sourced L-dopa in attempting to improve my functions. Maybe the vicious cycle scenario you describe fits in my case. I'll taper off in the evening (take just Sinemet) and find out if that helps me. It should help the cats too. They quit staying on my bed at night because i am kicking and getting up and down so much. Thanks for your kind reply Hikoi. Be well.

[park_bear in reply to Hikoi]

I have been having sleep problems lately, no tremors, just body not doing the sleep thing. I take only CR levodopa so it never really wears off. Just thinking out loud here.

[NanCyclist in reply to BUZZ1397]

Buzz, I used to wake up with tremor as well until a friend taught me self-hypnosis. I thought he was a little batty but agreed to go along with it. He told me to lie on my back with my quiet hand resting on one thigh and my shaking hand flat on the other. I was to close my eyes and as I breathed in I was to say (not out loud) Peace and as I breathed out Quiet Hand. The first time I lay there for a half hour with my dancing hand banging away on my thigh. Then it slowed down and stopped. Buoyed by success, later in the day I tried it again and after 15 minutes it stopped. Then after 5 minutes. Then I could pretty much will it to stop. So when it would awaken me at night, I rolled on my back and went through that routine. It doesn't work perfectly, but I'm not awakened by tremor any more. For what it's worth...

[attyj in reply to NanCyclist]

Nancy, I use this type of mediation daily. In the morning and in bed in the evening for 25 minutes. The tremors always cease. There have been some interesting articles on mediation and PD.

[attyj in reply to NanCyclist]

that's meditation

[BUZZ1397 in reply to NanCyclist]

Nan, that's remarkable. We should all try that out. I know that I am about to give it a try as soon as I finish reading the news. Thank you.

[Hikoi in reply to NanCyclist]

Nan

This is good advice. I can quieten my tremor with focused relaxation, sometimes i get back to sleep but not always. If i think of anything even slightly concerning me my tremors start again so i have to really focus on relaxing.

But the question i have Nan and Buzz is does your leg tremor too because that was more of an issue for me than my arm. It is just the leg on the affected side and it can drive me crazy.

Also Nan you say you are not wakened by tremor anymore. I also remember you writing how you decreased meds through exercise. Just wondered if the sleep improved around the time you lowered your med intake - random thought but i am interested.

[NanCyclist in reply to Hikoi]

My leg doesn't tremor so I can't help you there. I don't recall the sleep/med correlation. But as a general rule, I try to take as little meds as possible. I started Sinemet at 3 25/100/ day several years ago and worked up to 5. That was too much so I take 4.5 with the half pill at 7 p.m. I cycle an hour nearly every day and do Dance for PD and/or walking/hiking for another hour. Each morning I start with a series of ballet plies to stretch out my legs and shoulders. I just woke up from 7.5 hours or solid sleep. It makes a world of difference.

[BUZZ1397 in reply to NanCyclist]

Mmmm, 7.5 hours solid. I am right now so envious of you.

[parkie13]

People that have Parkinson's are the most interesting people in the world.

[park_bear]

What a remarkable improvement! I can't help but wonder what components of plasma are responsible.

[BUZZ1397 in reply to park_bear]

Yes, that is tingling my curiosity. But not as important as a demonstrable benefit, if it is repeatable among other patients. One could benefit and not care why, right? Yay for plasma if it works for all!

.

[NanCyclist in reply to BUZZ1397]

My guess, and it is exactly that, a GUESS, is that if it works, it will work on a subset of patients, not everyone. More and more trials are being run for people with specific distinguishing characteristics, i.e., genetic forms, people in restricted age groups, people who come from specific places, etc. Researchers are relying more on molecular evidence rather than clinical evidence, which seems to me to be more likely to produce results. They don't treat liver cancer the same way they treat breast cancer but they are both cancers. I expect similar distinctions will be made with PD.

[BUZZ1397 in reply to NanCyclist]

I successfully meditated using the mantra "peace, quiet hand" :). My hand tremor decreased and got still for awhile. Then while I was so tranquil, I began to notice my forehead over the left eye brow was beginning to twitch. Perhaps, the tremor was only displaced I thought and I'll just be chasing it all over my body until everything quiets down. Good levity is the best of healers. Be well Nan.

[NanCyclist]

What can I say? Just keep trying. At least you're amused. As are we all.

[BUZZ1397 in reply to NanCyclist]

Thanks, I have a weird sense of humor. Last night was not a fair trial. I eliminated my natural L-Dopa (which helps with my slowness) in the evening, allowed my C/L to get low, took half a 25/100 C/L tab a half hour before I wanted to go to bed and meditated. After about an hour and a half I began to believe I might fall asleep if I got off the couch so I tottered down the hall and dove into bed. But my spouse woke me up to help her with something one hour later at 3 am. Who knows how well I might have slept if not. After helping my baby I couldn't fall back to sleep until around 5 am and having a p b and j with some more C/L- a full tab. Last night suuuuuucked.

[hopedope]

You have started the year doing something important. Thank you for doing it.

[Juliegrace]

I never did reply to your response about PPMI. I think we met at the second luncheon for participants in Seattle a few years back.

I read your essay on your website. What you wrote resonates for me as I was Participant #5 for Focused Ultrasound (pallidotomy) for dyskinesia. My initial response was good (although not great compared to others), but within a few months those initial effects have lessened and I am close to back to where I started. It is also a treatment that is being looked at as something that may be repeated. But, that is off topic, other than to say I understand the hope and uncertainty in your situation.

Thank you for sharing.

[NanCyclist in reply to Juliegrace]

Julie, Will you be at the PPMI luncheon in Seattle on March 18? I hope so.

[Juliegrace in reply to NanCyclist]

Most likely not.

[Tribselyov]

Congratulations on your well written post. What we really need is a test for function that supersedes the placebo effect. Plasma May help but the immediacy of your response argues for psycho-biologic response (which is real and not to be taken lightly.... whatever the source) rather than abrupt changes in alpha-synuclein plugs. What outcome measures will be used? I applaud your honesty, integrity and super writing capability .."I would list more superlative's but I have to go ride my bike

[NanCyclist in reply to Tribselyov]

Are you a neurologist or MDS? My MDS has also suggested that I may be reporting a placebo effect as well, which seems logical to me too. That would have to account for quite a bit however. My balance is now normal. My sense of smell is restored. Cramps gone. Energy level nearly doubled. Nausea gone. Gait in a straight line. The tests that they use are both cognitive and kinetic. UPDRS, MOCA, memorize a maze, numbers and letters in sequence and backwards and reordered, all the words you can think of in a minute starting with various letters, listen to a story, repeat as much as you can immediately, then 20 minutes later. Same with lists of words. etc etc. In addition to UPDRS there is stepping in place for three minutes and several motor tests where I'm wearing sensors all over. Yesterday in dance for PD class I noted that I could do hand and foot combinations, which have always been laughable for me. The teacher noticed too. Can all of. this be placebo? I hope not but I'll take what they give me. In addition yesterday I started to exhibit some dyskinesia and tremor so I'm wondering if I now have too much Sinemet in my system? I've sent an inquiry to the PI.

[Tribselyov in reply to NanCyclist]

Placebo accounts for 35-40% benefit in most studies. Message is the placebo effect is good and real. Plasma may be additional but too early to say... anecdotal for now. How ever if you have 100 bricks and you throw them out the window one at a time... if only one goes up, it is significant..

More importantly, can a chronic positive outlook lead to a chronic improvement. Methinks, yes

MD. Surgeon sidelined by PD

[p-oui]

clinicaltrials.gov/ct2/show...

[NanCyclist]

Buzz left a message wondering how I'm doing. I return to Stanford this Wednesday, March 22 and have my final tests on Thursday and Friday. Then it's the waiting period. However, if I didn't know I have PD, I wouldn't diagnose it. Sleeping the night through is a challenge but most of my other symptoms are pretty well resolved. Anxiety, apathy, constipation, tremor, nausea, dystonia, dyskinesia, balance, sense of smell, confidence. All these things are gone or nearly gone. For how long? Don't know. Yesterday I skied all day with our grandchildren. I've been making quilts. I went on a four hour hike with my hiking buddies last Thursday. I say these things to give us all hope. Thanks for asking Buzz.