Living Beyond the Diagnosis

If your blood pressure is 120/80 to 129/80 mm Hg, you have elevated blood pressure.

• Your provider will recommend lifestyle changes to bring your blood pressure down to a normal range.
• Medicines are rarely used at this stage.

If your blood pressure is equal to or higher than 130/80 but lower than 140/90 mm Hg, you have Stage 1 high blood pressure. When thinking about the best treatment, you and your provider must consider:

• If you have no other diseases or risk factors, your provider may recommend lifestyle changes and repeat the measurements after a few months.
• If your blood pressure remains equal to or higher than 130/80 but lower than 140/90 mm Hg, your provider may recommend medicines to treat high blood pressure.
• If you have other diseases or risk factors, your provider may be more likely to recommend medicines at the same time as lifestyle changes.

If your blood pressure is equal to or higher than 140/90 mm Hg, you have Stage 2 high blood pressure. Your provider will most likely recommend that you take medicines and recommend lifestyle changes.

<<Me. Laughing my ass off>>

If you remember from my initial post, when this all began in April of 2022 at Inman Connect, I was hospitalized with a BP of 270/150. This was the root cause of my TIA (Mini-Stroke). This is almost DOUBLE what the American Heart Association considers “Stage 2 high blood pressure”.

That’s not even what made me laugh. What makes me laugh, and what becomes the #1 priority in your fight against Atypical Parkinsonism, is your average BP could be 180/120. No problem. Totally “normal” for you. They are pumping people full of drugs at 140/90 and you may be walking around without issue at 180/120. Now, to be fair, we have worked really hard on reducing that, because the fight against MSA is a brutal one, and the healthier you are the better your fight will be.

The real bitch, is not the High BP, instead it’s the low BP. Most Atypical Parkinsonism’s come with Autonomic Dysfunction and Orthostatic Hypotension. It’s the latter you gotta watch for. With Orthostatic Hypotension your BP can drop, up to 100 mm Hg, when you stand up. If it drops into the area of 75/55, there’s a pretty good chance, you’re blacking out. I blacked out 4 times, before we got the balance right. Twice my 125lb wife had to catch me (250lbs) and gently lower me to the floor. Of course, the first few times this happens everyone panics and calls 911. The ambulance comes and lets everyone in your neighborhood know you’re sick. After #3 we figured out a $3,000 trip to the ER was overkill. The ER is not equipped to deal with OH. In fact, there’s a good chance, the ER Doctor will not have a working knowledge of it. They simply “stabilize” your BP with an IV and drugs, watch you until your BP is back “in range”, and send you home. It got to the point where I was educating them on OH, AD, and MSA in general.

NOTE: I mentioned “until we got it under control” above. We did that through the correct mixture, and calendar, of medications. The dominant medication in your daily recipe is Dopamine. For me it is Carbidopa/Levodopa. 1 ½ pills, 3x daily. The introduction of a Fludrocortisone called Florinef. We started at 1 pill every morning, but transitioned to ½ pill when it started working too well and forced my BP up too high. These are the 2 main meds, but my full recipe is:

• Dopomine – 3x daily
• Florinef
• 81 mg Asprin
• 500 mg Magnesium – 2x daily
• B-12
• Folic Acid
• 800mg of Ibuprofen (This is for my body aches, you may not need)

With this mixture I now (as of this Blog Post) average 147/102, last month it was 157/106, and prior to that it was 165/110. So you can see the progression is positive, and yes, I feel better and can fight more! I can also do more, enjoy more moments with Family & Friends, and generally get more done.

NEXT UP: Design a Daily Routine. It will rule your life