Glenn Frey’s Death: Risk vs Benefits of Medication

This month we have lost entertainment icons. I listened to David Bowie’s album, Ziggy Stardust and the Spiders from Mars while afloat during Desert Storm, Shield and Watch. When I hear songs by The Eagles, I am flooded with memories of my early childhood summers spent on the beaches of southern California. I have many memories tied to music and I could go on, but that’s a whole other post. I’d like to talk about some things popping up in social media and news regarding Glenn Frey’s medications, and speculation of how it may have contributed to the cause of his death.

Patients like me, with chronic illnesses get mountains of advice from well-meaning friends and family encouraging us to walk away from science-based, researched treatment to more natural alternative treatments. alternative None of us were in the room with Glenn Frey and his family when he made treatment decisions, but chances are they carefully weighed the risks versus benefits. Like many patients, he risked illnesses because of a compromised immune system, and the many variables affecting any illness as it comes up.

My reason for writing this post is my concern about alternative treatment advocates, anti-vaxxers and supplement sales people, will use this press as a selling point for their useless products and sometimes dangerous advice. My message with this post is that there will always be someone selling hope. There will always be risk. Hell, the treatment I’ve been on since 2007, lists Lymphoma as a “side effect”. I get my blood work and monitor my health and continue my treatment because it has increased my mobility, stabilized my lung function and I am living well with my scleroderma. I no longer suffer. I have good and bad days like everyone, but suffering is not my way of life.

I urge patients to do their research. There is no “Google University”, and that many blogs quote other blogs as “proof” of their opinions and suggestions. Don’t listen to the Jenny McCarthys, because they are delusional self-important and ignorant.

Patients have to realistically weight risks versus benefits. Complications from illnesses like scleroderma, sarcoidosis or rheumatoid arthritis can hit us like a freight train, and if we’re not killed, we find ways to jump on and ride out the worst.

On To The Mission At Hand…

 

In order for occupational therapy to be effective, the patient must be on time, and consistent with appointment attendance. I was not. A trip to my closest VA was a four-hour excursion. An hour one-way, an hour there and an hour back- with no traffic, which would almost never happen- I changed my appointments frequently when I had them with OT, so my therapist limited me to just splinting. And really, driving over two hours for each appointment. Something had to change, and for me, it was my location.

The VA does provide options to see local providers called, “Fee Basis”, but that’s a whole other post.

If You Skipped to the End

I will be posting more about my progress in occupational therapy to restore function to my hands devastated by scleroderma, called sclerodactyly. Today, I will share a milestone: I was able to wear the splint for my right hand through the night, two nights in a row. Woo whoo!

 

Hand in splint designed by patient's occupational therapist for patient with scleroderma
Notice how the splint is cut around boney prominences to avoid pressure sores.

 

 

hand in a splint made by an occupational therapist to gain or maintain range of motion.
Yes, that is nail polish. I’ve been moving, there’s no time for a manicure. Don;t judge me!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In the pictures, there is some hyperextension going on in the ring and pinky DIP’s or distal interphelangeal joints. The splint will need to be adjusted. It feels comfortable to me, but as I strengthen, that hyperextension will be counterproductive and possibly harmful in the long run. During my fitting appointment, my hands were further back and the DIPs were in line. So, my hands have opened up some and my fingertips have crept toward the end.

Are you receiving occupational therapy?
Please give me a shout if you are. I’d like to know how others are doing. Hand therapy for functionality is not just for scleroderma patients. I meet stroke patients, paralysis patients, RA patients and more. So let me know what goal you are working toward. My goal is to maintain what I have, and gain some functionality. Of course I’m shooting for the stars for being able to play some guitar again, but I will be happy with even a small gain. Post your progress in the comments. Not for me, but for other patients who might read and be encouraged, or learn from your difficulties.

Thanks!

 

Link Sources:

Scleroderma Research Foundation

Joint Replacement.com

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