Parkinsons Disease

[Elfknitter.#]

My mother has just been diagnosed with Parkinsons. Anyone have any btdt experiences you're willing to share? I don't want to succumb to Dr. Google, other than the basic info on Web MD type sites.

[gingersmom]

My father had Parkinsons. You can PM me with any questions.

[jenslp]

Find a neurologist you and she are happy with first off.  As needed and before motor skills or speech get too bad, she should try to find LSVT Loud and Big programs.  LSVT Loud is a speech/voice program and Big is a motor skills program.  They are really wonderful programs and I've seen huge improvement with PD patients who have gone through them, but they work best when the skills are learned earlier rather than later. 

[gracesteacher]

We are at end stages with my mom.  Please let me know if you have have any specific questions.  My mom's condition is complicated with RA and now Parkinson related dementia.  One think the dr told mom to do was move her body and move her mind and concentrate on good nutrition and water.  He knew her sedimentary life style and love to the drive thru. 

 

Advise for most people going to the dr is take two people (patient and love one)  to make sure everything is heard and understood and to be able to ask questions.  There are many hospital based programs for the patient and family in our hospital system I advise looking in yours even if it isnt the hospital closest to her house.

 

Prayers

[Laurel-in-CA]

Education first--for all of you. We had many talks with my mom, who wanted to treat this like something she could recover from, not something that was going to keep getting worse. Her acceptance was a very gradual, slow process. Is your mom living independently right now? We had to help mom make a series of compromises as her medications grew more complicated and her limitations more severe. It was so important to have her near family who could go to the dr., talk to the aid or assisted living staff, etc.

 

In my mom's case, her situation was greatly complicated by insulin-dependent diabetes. She was diagnosed at 54 and lived with it for 20 years.

[Miss Peregrine]

MIL has been diagnosed for almost twenty years. She had the brain surgery about 10 years ago( I don't know what it's called)

 

She has been getting worse the last couple of years. Its getting harder. :(

[trulycrabby]

I have it, young-onset diagnosed at age 35. My grandfather had it; he lived to be 94. Feel free to pm with questions. 

 

My advice to the newly diagnosed is to avoid taking dopamine agonists such as sinemet or requip for as long as possible. Stay fit and active to retain mobility, consider treating depression (if it occurs) with wellbutrin, since it boosts dopamine a little bit. Sunlight boosts dopamine production, so have her get outside if possible.

 

I break my day into periods of activity and rest. Naps are mandatory, not optional if I want to stay functional throughout the day.

 

Have her reduce stress as much as possible, and realize that highly stimulating things like social interactions seem to drain the dopamine out of the body. I can jog five miles no problem but church is absolutely exhausting. Also, the ability to multi-task decreases. Close spaces, such as doorways and halls can make her " freeze," which is kind of like an instant where she cannot make her body move.

 

If she shuffles her feet, try to get her to remove area rugs in the house. Remove clutter, and try to keep living spaces open enough so that she can move around without freezing or tripping.

 

The hardest part of the disease is getting used to the idea of having it. It's not a death sentence; she will likely be functional and mobile for quite a few years. 

 

[gingersmom]

And for the record, although you don't hear about it much, there are people out there that have been cured of Parkinson's.

I have never heard of this. Do you have any links to stories to share?

[maize]

My grandpa had it and now my dad has been diagnosed with it. It is a hard disease to deal with. There seems to be a link between heavy pesticide exposure and Parkinson's, farmers get it at a higher rate than other people.

 

I read an interesting article recently about a study that found Irish ceili dancing was more effective than tradition physical or occupational therapy in helping Parkinsons patients...

[Guest inoubliable]

The creator of this blog recovered from it. My parents met him in person. He has helped some others recover.

fightingparkinsonsdrugfree.com

 

My mother is stubborn and has not followed the steps that he describes, but I don't think there's anything to lose.

 

Also might want to check out parkinsonsrecovery.com. They haven't had one in a while but they did hold Parkinson's Recovery Summits. My parents attended the one in Santa Fe last year. You can go to the website and sign up for the newsletter. Sundays they have "Sunday Connections" with topics that either directly or indirectly relate to Parkinson's.

http://www.sundays.parkinsonsrecovery.com. 2pm Pacific/5pm Eastern. I personally know one of the hosts for this upcoming Sunday segment.

 

 

So no scientific journals? No medical journals? No peer reviewed anything? 

 

 

There is a difference between being "cured" and "treated". 

 

http://www.parkinson.org/Video-Library/Is-there-a-cure-for-Parkinson-s-disease--How-is-it

[Momof3littles]

I read an interesting article recently about a study that found Irish ceili dancing was more effective than tradition physical or occupational therapy in helping Parkinsons patients...

 

Back when I was getting my master's in PT, there was some research on using metronomes and music to help speed up pace of walking and so forth in patients with Parkinsons.  There is also some research on using Tai Chi to help with postural muscles, balance, etc. in those with mild to moderate Parkinsons.

[G5052]

Both of my parents had it.  My dad was diagnosed at 52 and went for 25 years after diagnosis which included working until he was 65.  Having a neurologist with a specialty in movement disorders can make a difference.  He used to go to Mayo Clinic in Scottsdale several times a year because they were far better at figuring out the medications and knew more about new medications than his general neurologist.  We're not as sure about my mother because she wasn't very communicative at that stage (dementia), but they put her on levodopa and the tremor went away and her mobility was better.  

 

Like any chronic condition, so much depends on the individual's self-discipline, desire to adapt, and the quality of medical advice available.  Either way, you need to be prepared for the hard conversations on the horizon.  My father was very engaged that way, and I knew his wishes for many years before the hard decisions came.

[Elfknitter.#]

Thanks to those who posted. Unfortunately I wasn't able to go with my mom when she got her diagnosis. I have a feeling I'll have to do some follow up with her neurologist and possibly her primary. I'll be taking her to her MRI at the end of the month, but she said her next neuro appointment isn't until December- which seemed to be a while to me, but maybe that's normal?

[M&M]

My father was just diagnosed with Parkinson's too. This thread is scaring me. I'm glad it's here but I'm not ready to face this. MIL is recovering from major cancer surgery and I'm caring for her.

 

It's certainly been a challenging summer.

[southcarolinamom]

I'm having empathy pains for you!   :grouphug: 

 

Last month my dear 76 year old MIL was diagnosed. I posted on this forum and received wonderful  advice and virtual hugs from the posters.  In her case, she  is now having difficulty with handwriting (her beautiful spidery handwriting is getting smaller and smaller) and she has a lot of extra keystrokes when she types on the computer.  When I hug her, she feels like she is shaking from cold. But she is shaking from the PD.  Her right hand shakes so much that she is sometimes unable to use a knife to cut food.  She forgot how to turn over  a hamburger in the frying pan, until she stopped and mentally thought through the steps, and then finished the task.  

 

The go-to website I've used for the most helpful information has been:  www.pdf.org,  Parkinsons Disease Foundation.  Please keep posting and let us know how your loved one is doing.   Thank you for sharing. I hope we can help each other! 

[brendaannyouhet]

I was diagnosed 2 years ago at age 63. Symptoms were tremor in right leg, loss of handwriting ability,My normally beautiful cursive writing was now small cramped printing and soft voice. I also had difficulty rising from a seated position and have balance issues. I started out taking only Azilect, then Mirapex, and then Sinemet. Several months ago I started falling frequently, hence the reason for Sinemet. During the summer of 2021, I was introduced to Health Herbs Clinic and their effective Parkinson’s herbal protocol. This protocol relieved symptoms significantly, even better than the medications I was given. Visit   healthherbsclinic   , After First month on treatment, my tremors mysterious stopped, had improvement walking. After I completed the treatment, all symptoms were gone. I live a more productive life. I was fortunate to have the loving support of my husband and family. I make it a point to appreciate every day!