Tag: Health

PPMI Smell Test Participation Opportunity

Although the Parkinson’s Progressive Marker Initiative (PPMI) Smell Test is only offered to those who are sixty years of age and older, and live int the United States or Canada, I choose to use this platform to convey this opportunity because, quite frankly, a majority of my readers do qualify.

I have been participating in PPMI research, via online questionnaires, since 2022. I receive an invitation every three to six months. The smell test is different. I am actually asked to spread the word, inviting qualified individuals to take part in the study. Here is what they had to say:

Dear Keith,

Thank you for your contributions to the Parkinson’s Progression Markers Initiative (PPMI). Through PPMI, we are learning that ongoing smell loss is one of the most important signals of risk for Parkinson’s disease.

PPMI is exploring this link toward prevention. As a participant in PPMI, you’re our best ambassador. We need your help getting the word out. PPMI is asking everyone age 60 and up without Parkinson’s disease to take a free scratch-and-sniff test.

Encourage your loved ones to follow the steps below:
IconVisit mysmelltest.org/ppmionline.
Answer a few brief questions to receive your scratch-and-sniff test in the mail.
Take the test and enter your answers online.

Please also feel free to use our smell test toolkit, which includes an email/letter template, talking points, a flyer and more.

We are grateful for your participation in the study that’s changing everything. Thank you for helping us spread the word about this important initiative.

Sincerely,

Your PPMI Study Team

Should you choose to participate, you will be asked to create an account at PPMI where you can decide your level of future participation. You will be asked general questions about where you live, your contact information, your general background, and your ties to PD. Assuming you complete the required fields, you will be told that a Smell Test Toolkit is forthcoming.

Obviously, I encourage you to participate if you qualify. I have relatives, by blood and by marriage, who have PD and may already be participating in other PPMI research opportunities. Please add yourself to the list of those who are fighting to find treatments, causes, and cures for this insidious disease.

Those of you who are too young to qualify for the smell test research, I encourage you to go to PPMI, look into other research opportunities for you to participate in, create your account, and help with this program.

Thank you in advance for your efforts!

Smell Test Link

Smell Test Partner Toolkit (PDF)

Iatrophobia

Fear of Doctors

Originally, I planned to write about fear in general. But that subject seemed too broad. I may take it up in multiple posts at some later time.

Cigna Healthcare defines iatrophobia as “…people [who] have such an intense fear of doctors that they are said to have a phobia of doctors. The clinical word for this is, ‘iatrophobia.’” They further define symptoms as follows:

  • You cancel doctor appointments or keep rescheduling them to avoid dealing with the fear; you don’t even get the preventive care and important vaccinations you may need to help stay healthy.
  • Instead of seeing a doctor when you’re sick, you try and self-treat.
  • In advance of a doctor appointment, you are unable to concentrate on anything else, lose sleep, may not eat, or cry at the thought of the upcoming appointment.
  • Do you have a fear of dentists, hospitals, and even sickness or illnesses? Some or all of these other types of fears are commonly combined with a fear of doctors.
Cigna Healthcare

To be fair, Cigna also states from the outset that some level of stress leading up to any type of healthcare visit is normal. Based on the symptoms listed above, I cannot definitively say that I suffer from iatrophobia. However, based on my personal experiences in the past couple years, well, let’s just say, I suffer! I found it interesting that Cigna also suggests working with a therapist to help alleviate the symptoms. Okay. I know that therapists aren’t necessarily doctors. But seriously. When you have this phobia, don’t they count?! (sorry Cynthia 😉 )

About three years ago, I finally went to the dentist due to an ongoing toothache. I hadn’t been for a few years. COVID, and caregiving were great excuses to avoid the dreaded chair. Unfortunately, this pain would no longer wait. I had a cracked tooth, presumably from clenching my jaw as I sleep. I later got a mouth guard to assuage that issue.

So I went through the process of getting a root canal and crown. It was stressful. In addition to my personal angst, Pam’s cognition was deteriorating and, as a result, I had to take her with me, leave her in the waiting room (and give instructions to the front desk assistant) while I went under the drill. But we got through it without a mental breakdown (on my part).

Forward to after Pam’s passing

About this time last year, I had a similar problem on the other end of my lower jaw. A persistent toothache. I knew the symptoms and the process. Still a result of clinching my jaw. Schedule a visit to the dentist, go for a root canal, get the crown. I can handle this. Except this time I was told that there wasn’t enough bone left for a crown and I would have to have the tooth pulled.

Instant anxiety. Another loss trauma. I broke down crying while still in the chair! And, I had to schedule with another oral surgeon to get the procedure. Unfortunately, that meant I had plenty of time to “stew” over the appointment. Mind you, I was in a fragile emotional state, dealing with losing my Pam and trying to get my health and my life on a new trajectory.

I knew I was not in a good place when I went to the appointment that day. The first thing they do when you get in the chair is take your blood pressure. Mine was extremely high. They were almost afraid to do the procedure. Take it again, similar results. And again, just a bit better. I told them that I have the anxiety and elevated blood pressure every time I see a doctor and this is extra stressful. Procedure done. Take blood pressure again. Still very high. Now they were afraid to let me get up. But, having no other symptoms, they let me go.

Over the next few days I knew that my BP was still elevated. Still no symptoms besides a feeling of high anxiety. Got a monitor. Yep, still high. Ended up at the hospital. Everything normal except BP. Long story short, I’m on BP medicine now.

I’m not sure how much of this I have already written. But I came to the realization, somewhat recently, that I was living every day in fear of dying. I’ve been afraid, to an obsessive extent, that if I eat the wrong foods, don’t exercise enough, don’t sleep well, high BP, whatever, I was going to die. It is an irrational fear, due mostly, I think, to watching my Pam deteriorate and die in front of me. It is not abnormal in those who lose a close loved one.

Forward to current events

Well, backing up for a moment. Last year my right thumb began to lock up at the joints. Movement was painful and I lost range of motion and gripping capability to the point that I could hardly hold a guitar pick. Problematic! Over time it eased, and I was able to avoid seeing a doctor.

Last November, my left thumb locked up and it’s been a problem ever since. It has impeded my ability to play guitar to the point where I stopped for days at a time. I’ve tried to work it out on my own and discussed it with family and my chiropractor. She, along with a daughter who knows of such things, suggested that I look into physical therapy.

I have an upcoming performance, the first for a bunch of people I do not know, in a public setting. I’ve been working through the pain and impediment so I can practice in preparation. I finally made the move Wednesday when my chiropractor recommended a specific physical therapy company. I went directly there. They were great and, after a quick referral from my primary care, I had an appointment for Thursday. Now I have a therapy plan and high hopes for long term recovery from tendinitis. I also found out that, at least on my left side, it may be related to issues I’ve been having with my shoulder. So much for fear of doctors.

I’m not sure if I suffer from iatrophobia. I can relate to some of the symptoms. Maybe you have similar issues. Hopefully, with recent success, increased knowledge, and recognition of the normalcy of my experiences, I can better deal with health issues and abandon the fear of eminent death.

Monday I have a teeth cleaning and PT for my thumb. Wednesday, it’s an appointment for my hearing devices and PT. If getting out there and doing it help with overcoming a phobia, I must be on the right path. Hopefully also, with life in general. I guess the moral to the story is, if you have health issues, work with the professionals.