[Frank Mundo]

I am following ( and participating in ) the testing of sulforaphane with Dr. Albert Wright,  Low doses of sulforaphane taken weekly appear to be slowing or possibly halting the advance of parkinsons – particularly noticeably in non-motor symptoms – constipation, urinary urgency, fatigue. There actually appear to be some rollback in symptoms , explained (perhaps) in the restoration of mitochondrial dysfunction (neurons are off line not dead).  What attracted me to his research work was the soundness of his research, the fact that he focused on tapping Nrf2 pathway and developed a unique way to extract consistent (low levels of sulforaphane and experimented developing evidence of efficacy of the compound over 30 months with more than 20 people.  His research / approach is described in patientReseacher.com.  Frank Mundo

[Frank Mundo]

My weirdest symptom:

It’s been 8 years since I was “diagnosed” with Parkinsons (at age 68).  A recent symptom that appears only when I am lying on my back going to sleep at night (and have taken my 9:00 pm dose of Rytary) is what I can best discribe as a tickling, cold numb feeling that starts in the middle of my back and radiates in a wave like fashion down to my feet at a speed similar to a scanner on a fax machine.  This goes on for a minute or two and then goes away.

[Frank Mundo]

I have participated in four clinical trials – three were observational and a forth was interventional (took an experimental drug).  While I believe strongly that research is important and that, to make headway in finding effective therapies it is essential that trials be conducted (and I have most definitely “walked the talk”)  I have to say that the medical – research industry has a long way to go in order in terms of making trial participation attractive to participants.  By that I mean they’ve a considerable distance to go in making people feel like partners in research and more than like laboratory animals.   Sure, nursing staff and scientists are polite, considerate, appreciative of your contribution but very little effort is made to make you feel like you’re part of the team.

Let me provide some examples.  From the time I signed the Consent Agreement (some questions I had were never answered . . . and the Agreement was a non-negotiable item) I never received a single scrap of paper about the research.  No effort was expended either during or after the Trial to tell me the results of the research. I never received a letter thanking me for my participation in a project that extended over 20 months.  Never was there a meeting of participants with researchers after the trial was over.  I’m quite certain that were I to ask for information about other trial participants I would be told that I would not be given a contact number “for privacy reasons.”

The point I am trying to make here is that with very little effort the things that I mention above would cost very little to implement.   If research organizations would give thought to these things, I believe more people – having experienced being treated like a “team player” would be inclined to join subsequent trials, and the recruitment problem might be improved.

Of much greater importance to people in the United States (where a major portion of the world’s clinical trials take place) is the issue of  financial risk in the event of a “bad outcome.”  Unlike many countries, in the United States, if you participate in a clinical trial and you end up on your back in a hospital bed in long term care, you will get one or two months care from the research organization and then you’re “on your own” insurance and your family has to sue in order to get coverage beyond that initial short period.  Read the fine print BEFORE you participate in a trial and decide if you want to take the risk. This lack of coverage / responsibility  of research organizations remains a problem that has been discussed by two presidential commissions and remains unresolved.  Your doctor probably is not aware of this. You should review Consent Agreements with a lawyer as well as your medical insurance company.

[Frank Mundo]

I drive night or day, no problems.  I feel some anxiety in large parking lots when backing out of vision restricted slots. I am ready to give it up when problems arise.

[Frank Mundo]

I was diagnosed in 2014.  The most annoying symptom then  was dragging the heel of my left foot. Top one these days has to be urinary urgency.  Amusingly appropriate is the label “latchkey incontinence” as it manifests itself in its most extreme form when I arrive home and pull in the garage . . . requiring a virtual sprint to the bathroom when I arrive.  I’m sure its related to some sort of “conditioning.”  Mornings are worst times, when my dopamine level is low.

[Frank Mundo]

Thanks Jean. Did the speech therapist offer any exercises to strengthen swallowing muscles or expiration muscles? or provide any tips or advice on how to handle your swallowing, like for example how to prepare food or position your head when you try to swallow?

[Frank Mundo]

What has your neurologist told you about swallowing ?

I am very interested in swallowing.  90% of PwP’s experience swallowing problems at some point during their illness.  What advice has your neurologist given you an the following points:

1. How to determine whether or not you have a swallowing problem? The symptoms,tests that can be run,

2. Are there any strengthening exercises or therapies to improve swallowing?

Thanks for your help.

Frank

[Frank Mundo]

My first symptom was “dragging me left foot.”  Specifically the heel seemed to constantly scrape the ground.  That was the only symptom I recall.  My grandfather and uncle both had parkinsons, but it never crossed my mind that I might have it.   Finally my sister urged me to talk to my MD about this.  She referred me to a neurologist who, in ten minutes diagnosed me as “probably having Parkinsons.”  “The proof of the pudding,” she said was that if the symptom was significantly diminshed after taking Carbidopa-Levodopa then it was pretty much assured that I had PD.  I took the drug, symptom was significantly decreased and that was that.  After five years, other symptoms have emerged but the foot dragging remains the most significant symptom I have to deal with.  I am 74.

[Frank Mundo]

Have you considered self cathaterization?  I  think that the ability to relieve onself quickly without all the fuss and bother of getting up would make it worthwhilee.