Everyday Hacks to Live Well with Parkinson's

Marty Acevedo, Heather Kennedy, Tom Palizzi, and Jan Grimes discuss the tips, tricks, and "hacks" they've learned over the years to make living with Parkinson's symptoms just a little bit easier.
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0:00 - Introduction
1:45 - Hacks for the morning
11:43 - Hacks for the kitchen
19:20 - Hacks for being out and about
21:55 - Hacks for exercise
25:05 - Hacks for traveling
31:00 - Hacks for hobbies
32:40 - Hacks for camping
37:10 - Takeaways
38:55 - Exercise for vocal cords and swallowing

[@user-ef1yq4ff5t]

So happy to be able to listen to others share their stories about their lives with Parkensens. I was diagnosed with Parkensons almost 5 years ago but I'm sure I had it for 6 to 8 years before that. I am a widow and live alone but I am contemplating moving to a different home. At this point I am able to manage my home....but my current home has a lot of stairs and they are becoming a problem for me. I have lost my Dad, the following year my Mom and just last month I lost my only son. After each one of these events my symptoms have gotten worse. I take citalopram, amitriptyline and propranolol x3. I did levedop/carbidop I had great difficulty keeping it down but seemed to help better with my symptoms. Your videos have so much good information and it is so nice to know I'm not alone in this journey. Thank you thank you

[@helenrichards4447]

I've only recently been diagnosed with Parkinson's and found this group presentation very helpful and encouraging. Thank you all - very much.

[@matthewjacobs141]

I'm relearning how to walk...teaching myself how to place my feet...teaching myself to fix my gaze on a distant object to keep my balance and to swing my arms

[@judymclaughlin2742]

>j8 8

[@susanwelke2434]

@@judymclaughlin2742 pic😊

[@noelduffy1430]

​@@susanwelke2434 l...

[@spiritsciences2012]

Nice hints. Now ad a broken dominant shoulder from a PD fall and have my situation.

[@lrichard20]

These are such wonderful ideas, but even more beneficial for me was hearing such positive people speak with joy and laughter about their lives with Parkinson’s.

[@davisphinneyfdn]

Thanks for your comment. Laughter and joy go a long way!

[@justincase4254]

I love ❤️ you guys,just found your broadcast

[@TheLeaBentley]

To help my elderley uncle avoid accidents, I told him that only the doctor could issue a 'ladder licence' for him, and unless the doctor issued one, we weren't allowed on any ladders. This sounded odd to others, but I never used ladders around him either so it was a consistent rule for us. Once at a doctor's visit my uncle asked the doctor if he did 'ladders tests'. We successfully managed the following conversation, even though I had not warned the doctor previously. The doctor nicely agreed that my uncle could get dizzy easily so no he couldn't issue a 'ladder licence'. That made it official and made my life easier and his life safer.

[@laurineclemitson6846]

Ii89

[@mbugal]

I only rough cut my veggies I'm cooking with and then use a battery operated chopper for fine cutting. Works great.

[@michaelacanning9920]

Brilliant- thank you all!

[@bestmomever1347]

Guys, you are amazing! Your smiles made me smile ! You are so positive ! Thank you … I m happy that I found you .

[@annetteheatherwalker]

Thank you so much for all these hacks - watching with my son who struggles with early onset

[@bethroundell8424]

Thank you for sharing! Just a week tomorrow the Dr discovered my starting journey with PD @ 63. My eldest brother had pd but passed with diabetic complications within 6 mos of his diagnosis at 69. We had to purchase a new toilet system for our camp so we got a portable, I guess God had us prepping ahead PD travel of time. I sew shopping 🛍 bags. I add pockets in and/or out sides with appliqués designs. I always put a smallish pocket near the top for keys so you don't have to search the bottom, I use stiff fabric. I'll be lining the dark ones now! I bought 24 yards of handle strapping at a thrift store last week for $6, extra good deal! I have a room full of fabric to make anything and everything. I have to get busy! You are all so good looking, inspiring, smiling and you have been trail blazing for us new comers. My youngest daughter, slightly ocd, has embarked me on a house wide declutter recently. We have had minor basement leaks over the years, causing rapid relocation of MY sewing/craft stuff anywhere dry. Not having moved it I have no clue where things are. I have vertigo and meniers disease so i dont do rapid relocations. The Unpacking of HASH blows my mind. Now I know why I get so muddled, my brain has been leaking. I'm thankful I may have more time to complete my house cleaning task than I thought a week ago. My mom is 93 yo living on her own. I am not looking forward to sharing my PD with her, she was crushed when my brother found he had PD. I doubt I'll be 93 and on my own. So much to do to the house base as well, hubby seems to be refocused & more fit & back on track. Momentum, chug chug said the little engine that could! Thank you all so much!

[@patriciabaldwin4680]

Thank you so much for this video! I thought I was going crazy with my intolerance for heat, you have helped me tremendously! God Bless

[@tomomie9255]

You guys are fantastic!! Thank you so much for sharing these useful tips🙏🏻 really helpful 👍🏻👍🏻👍🏻

[@davisphinneyfdn]

Glad to hear it!

[@murielmeyer6009]

@@davisphinneyfdnok.. I'm new to this series but I am rea dy

[@murielmeyer6009]

ready to work on with you to make my exercise the best medicine i could make and decisuinmmkcison In ⁹that I could

[@murielmeyer6009]

decision ican make at present time...... However I must consult with my doctors odue to a major o neurological issue as well as myriad of lesser medical problems.

[@murielmeyer6009]

OOOPS...I think I got you mixed up with an add for supplement called

[@debbieheim3694]

Than y’all so much. I appreciate your sharing and hacks.. very helpful.

[@tomomie9255]

I want that kitchen stool!!

[@joannashelton3253]

i was diagnosed a few months ago and this was such a wonderful video to find. these people are so inspiring and fun and creative and i learned so much…love finding i’m not alone with these everyday problems and so happy to gather their hacks into my repertoire! thanks sooo much! i’ll be on the lookout for any videos with real people and their experiences living well with PD…

[@davisphinneyfdn]

Thank you, Joanna. We're glad you found us!

[@belkisouerghi2961]

@@davisphinneyfdn6

[@realparkinsonslisaryan]

I don't have PD but some of these tips are great for my older clients with and without PD. You all are great to listen to! thanks!

[@joymurray4002]

Heather, you have the best style!

[@johnekins4408]

Wow just found you guys, I have started at a BIG AND LOUD group, I will pass on your tips to my professional OT and PT people.

[@clairemercer1032]

Thank you for the helpful hacks !!

[@micheleberg3090]

Fun panel and very helpful. Thank you all! Michele in Topeka, Kansas

[@chiprobertson4006]

You don’t need to jury rig your a Bobby pin for buttons-there are devices called button pullers available online that are ideal for this. I use them often foe cuff and collar buttons. J thanks for a great session on Hacks for Parkinson’s.

[@johnekins4408]

Amazon sells button pullers, cheap and simple to use.

[@bethroundell8424]

I have a brass head and foot board bed I won't have to affix any handles even if I get turned around.

[@veerleaertsen626]

I'm loved this!

[@user-tx3yw6do8p]

I m newly diagnosed and appreciate the hacks that were shared. Thank you

[@danita3320]

First time listening /watching Hacks. Really interesting and inspiring. Will look for more . PD 5 years and under my own power , but will check out walker.🙏🏻

[@neeta25011958]

amazing ideas thanks for sharing I have put handles on the potty and one on the side of our bed to help my PD hero husband to push him self up during off times ... !

[@gdowe1393]

Yea we P

[@joanflack2109]

Just found this…wonderful ideas. Please do another one. Will be looking forward to buttoning, tying, putting on makeup and other hacks. Thank you!

[@davisphinneyfdn]

We have a several other resources on Parkinson's hacks and gadgets: kzbin.inforyDvdWjgLAA kzbin.info/www/bejne/gKabqadsqLFqpsU davisphinneyfoundation.org/notes-from-the-parkinsons-care-partner-meetup-february-2023/

[@joymurray4002]

Love all of these ideas!!!! Love the pills on the bedside, stretching before getting out of bed and LOVE the knot purse! Do u sell them?

[@rosanegurgel6665]

Good ideas!❤

[@maximo1766]

I love the optimism. Thank you for sharing.

[@christinemaud4913]

Very interesting. Regarding button there is already a button hook on the market or used to be when I was an OT

[@justincase4254]

Those suction cups are fine however I have found they are not as durable as the commercial grade found at harbor freight for just a few dollars more. Believe me they are definitely stronger and can be more permanently apply they are sold for professional type glasswork etc.

[@jimcandykollath8425]

She began with that & said it was helpful for travel.

[@aliciafincher2995]

Bathroom handle - got one Kitchen Stool on wheels - yep Electric tooth brush -yes Shower Stool - yes Handicap Placard - yes Walker and canes at work and home - yes Mini stepstool for SUV - yes Ask for help - Struggle with that 5 a day pill organizer - want one Thank my spouse - EVERY SINGLE DAY Looking at exercise bikes Curbside pick-up - OMG I LOVE IT Used to sing Soprano now I sing Tenor Thank Y'all

[@elijahdrayer1191]

I am trying to build one for my sister. Does yours have 4 swivel wheels or 2?

[@aliciafincher2995]

@@elijahdrayer1191 I bought a regular rolling stool.

[@tomomie9255]

Yea music helps ❤️

[@sallywomer5774]

I have a guest ion. Have you had voice trouble? It started 2 yr. ago when I stopped talking briefly and now it has gotten to last a long time until I just say “Oh never mind” the rest of this has been very good.

[@yvonnelane4697]

get some time with a speech therapist

[@LizA-gz5jf]

Can I ask the name of the web based exercise program and app one of the ladies helped design?

[@toryberch]

I really appreciate these conversations I'm in the middle of my diagnosis. My Neurologist isn't 100% yet.and neither am I I don't get the on off symptoms exactly the way you all do. I have slowness and stiffness. When my Ldopa is wearing off my legs feel restless achy and fatigued. I can still function not as well but I'm not stuck the way most seem with Parkinson's. Is there more than 1 version of on off?

[@johnekins4408]

I have been on my own for a few years now. I would like to date but my P holds me back, any thoughts.

[@davisphinneyfdn]

John - This might be a good session for you to watch on love and dating with Parkinson's. kzbin.info/www/bejne/sKXJgoWbfbl9oac

[@shoshanachavab]

I don’t bath every day. I was from the basin every day and have a thorough beauty day and bath once a week.

[@karenavery3672]

What do you show ]to get a wheelchair, or allows you to get on early, or sit in an isle seat? Sometime the next plane to catch is a long way to go and you are afraid of not making it because you walk so slowly.

[@shoshanachavab]

I have pre requested wheel chair assistance for many years. No problem

[@karenavery3672]

Another question - how long did it take until you started having enoguh of a problem to where you needed these hacks? I am newly diagnosed - freeze al the time and have a hard time turning, bit I can hold objects. I live alone and can't decide if, or when, I need to sell my home and move to where my kids live.

[@katebrethauer1909]

I know progression is different for everyone. I am spouse - my husband has Parkinson’s. Now five years after dx he needs quite a bit of help. He would not be able to live alone. We downsized and moved within a year of dx. Closer to kids and house is accessible in all ways. Good luck. ❤

[@veraroyen4986]

Start at once to move to your kids. You need time to get used to the new environment, to get new doctors, physiotherapists, etc.

[@michaelpersson68]

Think this is good

[@shoshanachavab]

I have an emergency button at home and also one I wear around my neck for outside the house.

[@elijahdrayer1191]

I have a question about the bench that you can move around the kitchen. Why does only one set of wheels swivel? Where do you find a dolly like that or do you have to modify? What is the problem with 4 swiveling wheels?

[@JOHNNY69217]

how can have a contact with Jan Grimes? iam from toronto canada

[@tammydawnhardin641]

I want a bag!

[@Here---Now]

21:00 car buying tip

[@matthewjacobs141]

Brushing my teeth is a real hoot...I already have chipped a tooth

[@aliciafincher2995]

What was pill container?

[@stevesamuels774]

Heather said it was made by "Feeling Gear", but I can't find a website or any other company of that name.

[@stevesamuels774]

Ignore my post below. The containers are humangear GoTub containers They come in small and medium sizes, and you can find them at REI in packages of 3.

[@ronbevins5380]

I have had Parkinson's for about 3 years. My doctors have prescribed lova dopamine. But that medication does something bad to my brain. The meds do help my mobility some but it is not worth the woosiness it causes. So, I have stopped taking the prescribed medication. The doctor says that I am on the correct medication. I don't know what to do..

[@johnekins4408]

Just taken my first fall, not good, brain bleed 911 call, very scary.

[@nooshinalijani9837]

Hi

[@sjwh]

Please tell me how to put on mascara and hit my eyelashes!

[@alabamatide8192]

what irks me is when my son tells me that he read on it, and knows that parks does not do...a,b,c,......ughh!

[@user-jq5xb1vq2s]

How long have these people been living with Parkinson’s

[@davisphinneyfdn]

The people with Parkinson's in this video were diagnosed between 2006, 2008, 2010, and 2011.

[@jrrosania486]

Heather is wonderful

[@abbosovabror4202]

Felicidades, es un buen ejemplo. 200 sentadillas son unos QQGIRLS.Uno muchas y un buen ejercicio. Se deja ver que hay muy buenos resultados 😍👍 Saludos desde la Cd.. de world 🌹😉💖 los mortalesa abian apreciado tan hermosa mujer.k

[@justincase4254]

Does the questioner have P D also ?

[@user-mw5sg2ts8z]

When i take my levadpop i chase it with a nutra bar

[@user-mw5sg2ts8z]

Yep

[@user-mw5sg2ts8z]

Sex?

[@shoshanachavab]

Since I am using a stick for walking people treat me differently in a good way. Help,me across the street into and off the bus. And of course my gray hair 🧑‍🦳 also helps.