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Does anyone have multiple diagnosed illnesses besides P/D? I have 5+

Posted by bruizersmom @bruizersmom, Oct 28 1:33pm

Besides a diagnosis of Parkinson's Disease, I have Peripheral Neuropathy, Irregular heart beat (Bigeminy), Epilepsy, mild Cognitive Decline, Raynaud's Syndrome, vision problems, GI problems, and a host of other disorders/problems all of which may be non-motor P/D symptoms/problems/disorders (which would fill up the whole page!)
Please let me know if and what you have besides P/D! I'm on multiple Mayo groups and many topics sound oh,so Parkinson's to me.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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suebullmc | @suebullmc | 3 days ago
In reply to @bruizersmom "@jflamini , good grief. I have enough of a hard time getting out of bed, letting..." + (show)
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@jflamini , good grief. I have enough of a hard time getting out of bed, letting my dog outside & back, walking 4 steps up to my brother's kitchen and back down...that's about it for exercise! Where do you get all the energy??? When I try to PUSH myself, I stress, which BANG!!! turns on every symptom in the book. I just stress too much I guess, but I don't know how to avoid this trigger. Five to seven days ? I spend 5 to 7 days sorting thru my to-do list, making/breaking/rescheduling doctor stuff (*Cardiologist. ENT, GI, Psychologist, Psychiatrist, Seizure doc, P/D doc/Gen Neurology doc, Pain doc, and a few more...one for each symptom of pd, one or more for the other crud. i just can't find the time except for the absolutely necessary naps.

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@bruizersmom
I know it is hard. But my husband’s movement doctor (part of a Parkinson’s Foundation of Excellence unit at Chapel Hill, NC) agreed that moving to a 100+ year old building with 26 steps to our apartment was good. After a bad illness (rhabdomyolysis was the result), he is up and down those steps multiple times each day. Even walks around the block! I’m glad I pushed for the move!

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janna2 | @janna2 | 2 days ago
In reply to @jatonlouise "@janna2 - I have always used my sense of humor to get through rough patches, so..." + (show)
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@janna2 - I have always used my sense of humor to get through rough patches, so fortunantely my funny muscle is so well developed that it may outlive me. I was wondering who would take care of it after I no longer can. Shall I put you on my list of available sponsors for a lonely funny muscle?

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@jatonlouise 🤣😂 Thank you. Humor IS the best medicine. I no longer seem to be able tell a story or a joke to save my life. The squirrel is strong with this one. That’s the part of my PD journey that REALLY annoys me at this point. Guess I’m heading to the part where old jokes will always be new to me😆. At least I have been keeping my docs entertained.

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jflamini | @jflamini | 2 days ago
In reply to @bruizersmom "@jflamini , good grief. I have enough of a hard time getting out of bed, letting..." + (show)
Profile picture for bruizersmom @bruizersmom

@jflamini , good grief. I have enough of a hard time getting out of bed, letting my dog outside & back, walking 4 steps up to my brother's kitchen and back down...that's about it for exercise! Where do you get all the energy??? When I try to PUSH myself, I stress, which BANG!!! turns on every symptom in the book. I just stress too much I guess, but I don't know how to avoid this trigger. Five to seven days ? I spend 5 to 7 days sorting thru my to-do list, making/breaking/rescheduling doctor stuff (*Cardiologist. ENT, GI, Psychologist, Psychiatrist, Seizure doc, P/D doc/Gen Neurology doc, Pain doc, and a few more...one for each symptom of pd, one or more for the other crud. i just can't find the time except for the absolutely necessary naps.

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@bruizersmom I agree, it's a lot so start small. Sounds like yoga would be a good starting point. Nothing crazy, just breathing and gentle movements. Chair yoga can be an excellent opportunity for some stretching. You may find a zoom class online. Start slow with walking for just a few minutes and increase from there. The point is you must keep moving to use it or lose it. Muscle mass is important to maintain your balance. After a little exercise I earn my nap time which I take almost every day around noon.
The yoga including slow breathing may help calm the stress and some of the pain. My wife's favorite quote related to PD.....It's not about waiting for the storm to pass, it's about learning to dance in the rain.
Try one small step and don't give up. The journey of a thousand miles begins with a single step.
Please let me know if I can answer any questions, Joe

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jflamini | @jflamini | 2 days ago
In reply to @janetbender "@bruizersmom I’m in Philly with several large hospitals nearby. While we have many docs in Center..." + (show)
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@bruizersmom I’m in Philly with several large hospitals nearby. While we have many docs in Center City, the problem is GETTING an appt.
First visits to see specialists take 6 months so you play the game calling each hospital to book the earliest available appt with Anyone in the specialty you need. Waiting lists for cancellations are hit or miss. Mostly miss.

Does anyone else have problems getting new Doctor appts?

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@janetbender Yes, and also a problem scheduling follow up appointments. We schedule six months in advance to see an excellent movement disorder specialist in Philly. It appears Jefferson has a good program based on conferences I attended and they appeared to have more appointments available.

Best wishes, Joe

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saganjames | @saganjames | 1 day ago

A respected Doctor here in North Carolina recommends reaching out to Dr. Laurie Mischley at Seattle Integrative Medicine, as she specializes in this field. She also wrote a book called Natural Therapies for Parkinson's Disease, which may be worth checking out. I believe her work goes beyond PD.
Dr. Mischley works via telehealth.
Seattle Integrative Medicine: (206) 525-8012
https://seattleintegrativemedicine.com/
Believe me, I have no interest in SIM other than to help those with these miserable disorders.
Regards,
Sagan

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bruizersmom | @bruizersmom | 1 day ago
In reply to @saganjames "A respected Doctor here in North Carolina recommends reaching out to Dr. Laurie Mischley at Seattle..." + (show)
Profile picture for saganjames @saganjames

A respected Doctor here in North Carolina recommends reaching out to Dr. Laurie Mischley at Seattle Integrative Medicine, as she specializes in this field. She also wrote a book called Natural Therapies for Parkinson's Disease, which may be worth checking out. I believe her work goes beyond PD.
Dr. Mischley works via telehealth.
Seattle Integrative Medicine: (206) 525-8012
https://seattleintegrativemedicine.com/
Believe me, I have no interest in SIM other than to help those with these miserable disorders.
Regards,
Sagan

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@saganjames doesn she treat via Zoom?

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saganjames | @saganjames | 17 hours ago

Don't know, give a call.
Regards,
Sagan

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