Vid host says, "It's so frustrating. It's so hard." Yes, it is. First lesson of PD is that it is hard. Second lesson is that it gets worse. Third lesson is that it does not get better. Fourth lesson is that being upset doesn't help; rather, being upset adds to your suffering. So, what to do? Drop the emotional attachment, and face PD just as it presents itself. Acknowledge PD does and will affect your life in every way. Accept the challenge you face. Do what you can to diminish the presence of symptoms. Maybe there will be a break-through cure in our lifetime, maybe not. Either way, live the life you have as best as you can.
Hi Alec thank you for your kind words and encouraging comment. It's not always easy for separate the PD from our perspective but it is good advice. Thanks for the comment and for watching.😀😁😊
I have thought about not driving because of my slow reaction time and my confidence in my driving. I haven't yet but I know it's coming at some point. Also people who don't have or understand Parkinson's kind of frustrate because they just don't get it when you say I can't do that any more or I'm sorry when I'm shaking or can't get my words to make any sense. I admire you and others who are making videos even when you may not feel like it. May you have better days!
Hello David i am now 58 years and i am now 8 years diagnost with Parkinkson . I looking out for you posted movies ....😊 My job was driver by the fire brigade . Last year i give up my werk . It was a verry heavy choice i got to make . If my collega's pass in the street with " sound and lights" my hart is bleeding . Buth there was no choice on it . We have to be strong and going on . I am now at the point that i make myself ready for DBS treatment . Dont you think about it ? Greets from me .
Hi Sharon you are correct this was a very difficult video to film and it took me a couple of tries before I was happy with the wording. These Landmark events can be very large in life but on the other hand I am getting out and walking more and that will help me quite a bit. I know it's frustrating when people don't try to understand but it's the ones that invest in your life in spite of the Parkinson's that you know are the real friends. 😃😊😎
Hi Pascal, I miss my last job as well, but as an overhead door technician, I could not do the job anymore anyhow, so I am happy to not have the pressure. I am on the list for DBS. Thanks for watching and for your comment.😉😀😁😊
When the time comes to make the difficult decision to give up driving we need to be able to honestly face reality and find alternative solutions. Even though I don't trust self-driving technology I would love to see how in the future it can help safely transport people with Parkinson's or other illnesses. Thank you for sharing your decision with us!
Good point Jennifer, self driving technology could help a lot of people keep their independence. Let's hope it becomes more accessible for everyone. Glad you are able to keep driving. 😃🙂
Sorry to hear about you having to give up driving but you did the right thing for sure. You didn’t need the added stress of worrying about making it back home. It must be hard giving up a part of your independence but your wise to admit your limitations when it comes to Parkinsons and it’s demands on your health.
I am so sorry that you have given up on driving due to conditions . Hear you and others talk about not wanting to hurt others , that is a selfless sacrifice for others and says much about you . I was in DC 2 weeks ago . 9 hours in vehicle round trip . Body is still hurting from sitting so long
Thank you for your story. It was very good I myself was diagnosed with Parkinson’s in 2017. My symptoms have slowly gotten worse my swallowing my speech it’s hard to write because the tremors they come and go just like my speech some days I’m very good or some parts of the day I’m good all the parts I’m not good my driving not water is not so bad right now, the only thing I don’t like is my eyes don’t move back-and-forth like they should. I’ve always had trouble with that now that is worse. That’s the only thing that scares me but I like your segment it was very good stay strong and look to see more of your stories in the future. Bye for now.
Hello, thanks for saying hi and sharing a bit of your story. Symptoms can be difficult to deal with like you say. I understand. Hope to see you around the channel again.😊😁😀
When I hear this I just think about how smart and wise you are, I know it was not easy. My husband got his license revoked on our first visit to the neuroglist. He had been a professional bus driver most of his life and was a very skilled driver. He had renewed his license when he was 80 passing his written test with no problem, The first time we went to the neuologist he was 83 and he revoked his license on our first visit. my husband by that time did not really understand what happened. He did not accept it for a long time but thankfully he has finally accepted it, but I still hide the keys to the car, because a psychotic episode is always possable.
Hi Lynette, that you for sharing your PD walk, and also for your kind words. That must have been a very shocking experience when the neurologist revoked your husband's license. It sounds like there is a lot going on for your guys. My wife is planning to record a few caregiver videos in the near future. Thanks for your honest and open comments.😀😁😊
Hi Ann. You are right I am more relaxed not worrying about driving. It's just these Landmark events can take a lot out of a person. On the other hand I am walking more so that is a good thing. 😃😊😎
The giving up my car was the hardest for me. Once I has the paper confirming Parkinson, I took it to human resources and by the time I made it back to the Pharmacy (I was an IV technician) she said you can leave. I thought she meant for.the day. She said no you are.done. you cannot do your job with this.diagnosis BOOM 29 year career ended in 2 sentences. I was.stunned. I keptm
!my car.hoping thru exercise and medication I could someday drive again. But its not possible. I gave ot.to my. Friends brother. He was.so.happy. pay it forward
Hi Therese, wow what a hard way to be let go. Just rip off the bandage without any warning and toss you to the side of the road. I am stunned just hearing about it. Giving up the car for me has also been difficult. Miss the freedom.😀😁😊
Oh, my foot is sooo sore after using the clutch. Takes me an hour to get home from work in slow traffic. There will come the day when I can't do it anymore
Well David, my driving journey ended close to a year ago but at the time it was a financial move not a driver's one. But in the last 7 months I was told I had Lewy Body Dementia and that driving on the highway 🛣️ was a possible risk to injure others. For me I take that responsibility very seriously. My religious belief is if I caused loss of life then I'm blood guilty before God (Gen 9:5/6 ) so in that respect it's all good I'm ok with not driving but losing that one more thing that thing that defined my adulthood for over 40 yrs is tough. So to bring some joy back in to my life I've taken up a new hobby 😀 one that is natural to me and helps with anxiety and pain ( reborn dolls, the sweet cute ones and not the scary ones ha ha 😅
Hi Tory, our viewpoints on giving up the driving are very similar we don't really want to hurt ourselves or other people. That's good that you have taken up a hobby that is a lot of fun. I am getting out and walking more of which is benefiting me in every way. Yes we are saving a bit of money too which actually does help quite a bit. 😎😃😊
@@sharoncribbs7516 Hi Sharon, my diagnosis was determined by my symptoms. I started having memory issues like forgetting my neighbors names or to remember to shower But a couple years prior to this I had auditory hallucinations though I didn't know it at the time I thought it was normal to hear my Mom's voice calling my name or seeing a quick running mouse that wasn't really there. If you search Lewy Body Dementia association symptoms you should find several of their videos with real interviews from those with it. If I can help in any way let me know and I'll try 😊
Can you bike your way to places instead? You can get some thick tires to help you with the balance. You'd also get some exercise at the same time to increase the dopamine. Some amino acids can help you with dopamine synthesis like l-phenylalanine and l-theanine (found in black tea).
Hi Mac, most places that I need to go I can walk. Will likely need an uber now and then in the winter. Thanks for the black tea tip. Is it caffeine free?
I am close to the issue. I only drive direct route with out free ways. It is strange, when I get in my manual shift MX5 Miata, it’s like different pathways cut in and I drive it straight up. The worst is my old Grand MARQUIS, it is a huge cloud to drive and I do have issues. I am leaving longer and longer distance to make up for time issues.
I'm trying to understand the "off". I find myself trying to stay in more of a highway situation versus bumper to bumper. I drive stick shift and sometimes on a hill I don't accelerate as quickly as I would like. Should I prepare myself metally to give up driving due to PD? I'd really like to understand this more. Thannks for this video. 🙂
Hi Javier, you have certainly asked me a tough question. Should 'you' prepare mentally to give up driving due to PD? If you are beginning to have problems driving, like accelerating up a hill, then I think you need to at least talk to someone. I was having problems like turning the steering wheel, so you could imagine on a corner how dangerous that could be. Yesterday, I was driven to support group by someone with PD who is 77 years old, and then driven home by a wife of one of the PWP's who is 78. I AM 49 YEARS OLD!!! Wow that hit me hard. I had to talk to my wife for a while before I could fall asleep. I feel more relaxed not having to worry about causing a problem others have to fix by revoking my license. This video describes my off times fairly well. Thanks for the tough question. Keep them coming! czcams.com/video/wwWOeWaApho/video.html
Hi David, I stopped driving about a year ago. The last time I drove was to the CVS drugstore which is about 2 miles (3.2 km) down the hill (we live in the S.F. Bay Area). We have a Tesla with Full Self Driving software; however, it's not 100% capable yet. My wife will drive from our home to our daughter's house in Oregon and let the car do about 95% of the driving. She does not have Parkinson's. I have PD and I do not want to have the slightest possibility of hurting anyone. Here's a little video of me telling my car to go park itself. czcams.com/video/ZSTpm8L9O00/video.htmlsi=u_U5UY2VoO8hmKUH
Thanks Tim. Have thought about a Tesla but it's just not in the budget. I don't blame you for your stance on not wanting any chance of hurting anyone. I agree. We are responsible for our actions. Thanks😁😊😀
My name is David a Olsen. I was diagnosed with Parkinson’s in 2017. My symptoms have gotten getting have gotten worse and now I find that I’ve always had this problem but now it’s worse my eye movement is not very good when I drive I drive good, but I have to move my head to look out the bat. You know the rearview mirror the Sideview mirrors all look around my eyes don’t automatically move by themselves. Did you have this problem as well When I’m driving I’m focused so I don’t get the tremor so much but my eye movement and and I always try to keep my concentration when I drive so luckily for now I’m still able to drive. I try not to drive too much at night did you have the same problems or were yours more of the mobility and rigidity problems when you were driving if you could give me any help they recommended that I go to a nuclear ophthalmologist. Did you have to do that as well if you could pass on any related comments or things that would help me be greatly appreciated. Thank you.
Hi David, I was diagnosed in 2017 as well, good year! All I can suggest about making the decision to drive is that as soon as we start the engine we are responsible for our actions. So if you feel safe to drive, no worries, but if you don't feel safe, park it! If you are having difficulty seeing what is in the mirrors then definitely see an eye specialist. For tremors, check out our latest blog post about something that could help. www.lifewithparkinsons.ca/post/hand-tremors-temporarily-reduced-by-breakthrough-medical-device-introducing-the-vilim-ball I hope this helps. If you would like more info you can always send an email😁😊😀. info@lifewithparkinsons.ca
I am a separate and wheelchair-bound bedridden sling lifted everywhere in my command to be showered and toileted if I can make it to the toilet that is still in the hospital just found a nice group home and miles and Australia how about tell me a little bit about yourself get back to me by
Hi Donald, thank you for sharing a little bit about yourself and your situation. Glad you found a nice group home to live at. I hope you get the care you need. A little bit about myself, diagnosed with PD at 43, and just trying to deal with life as it comes. Here is a link to my diagnosis story if you haven't seen it.😀😁😊 czcams.com/video/HhT_k7ebDS8/video.html
Hi Edward, thank you for the encouragement. I am getting out there and walking more today I walked 3 km this morning hopefully that is enough to start my fight back. 😊😎😃
@@LifewithParkinsons that's awesome!! My husband was just diagnosed with Parkinson's on 3/5/24. As an RN I knew from the developing symptomatology he's had for a couple of years. You seem to be doing great. God bless you sir🙏
Vid host says, "It's so frustrating. It's so hard." Yes, it is. First lesson of PD is that it is hard. Second lesson is that it gets worse. Third lesson is that it does not get better. Fourth lesson is that being upset doesn't help; rather, being upset adds to your suffering. So, what to do? Drop the emotional attachment, and face PD just as it presents itself. Acknowledge PD does and will affect your life in every way. Accept the challenge you face. Do what you can to diminish the presence of symptoms. Maybe there will be a break-through cure in our lifetime, maybe not. Either way, live the life you have as best as you can.
Hi Alec thank you for your kind words and encouraging comment. It's not always easy for separate the PD from our perspective but it is good advice. Thanks for the comment and for watching.😀😁😊
I have thought about not driving because of my slow reaction time and my confidence in my driving. I haven't yet but I know it's coming at some point. Also people who don't have or understand Parkinson's kind of frustrate because they just don't get it when you say I can't do that any more or I'm sorry when I'm shaking or can't get my words to make any sense. I admire you and others who are making videos even when you may not feel like it. May you have better days!
Hello David i am now 58 years and i am now 8 years diagnost with Parkinkson . I looking out for you posted movies ....😊
My job was driver by the fire brigade . Last year i give up my werk . It was a verry heavy choice i got to make . If my collega's pass in the street with " sound and lights" my hart is bleeding . Buth there was no choice on it . We have to be strong and going on . I am now at the point that i make myself ready for DBS treatment . Dont you think about it ?
Greets from me .
Hi Sharon you are correct this was a very difficult video to film and it took me a couple of tries before I was happy with the wording. These Landmark events can be very large in life but on the other hand I am getting out and walking more and that will help me quite a bit. I know it's frustrating when people don't try to understand but it's the ones that invest in your life in spite of the Parkinson's that you know are the real friends. 😃😊😎
Hi Pascal, I miss my last job as well, but as an overhead door technician, I could not do the job anymore anyhow, so I am happy to not have the pressure. I am on the list for DBS. Thanks for watching and for your comment.😉😀😁😊
😮
Good job. Thanks. I gave up driving a year ago and glad I did before I hurt someone.
Hi Trooper, glad you found the video helpful. We gave up driving for the same reasons. 😁😊😀
When the time comes to make the difficult decision to give up driving we need to be able to honestly face reality and find alternative solutions. Even though I don't trust self-driving technology I would love to see how in the future it can help safely transport people with Parkinson's or other illnesses. Thank you for sharing your decision with us!
Good point Jennifer, self driving technology could help a lot of people keep their independence. Let's hope it becomes more accessible for everyone. Glad you are able to keep driving. 😃🙂
Sorry to hear about you having to give up driving but you did the right thing for sure. You didn’t need the added stress of worrying about making it back home. It must be hard giving up a part of your independence but your wise to admit your limitations when it comes to Parkinsons and it’s demands on your health.
Hi Jim, thanks for the kind words. PD is a wild ride! I am happier without the stress for sure.😀😁😊
I am so sorry that you have given up on driving due to conditions .
Hear you and others talk about not wanting to hurt others , that is a selfless sacrifice for others and says much about you .
I was in DC 2 weeks ago . 9 hours in vehicle round trip . Body is still hurting from sitting so long
Thanks, Jerry that is very encouraging and supportive. 9 hr round trip is a difficult journey.😀😁😊
I’m getting close to being in the same boat, dude. I feel your frustration!
Thanks Jeremy, I could probably do it if I had too, but it's time to keep the roads safe.😀😁😊
Thank you for your story. It was very good I myself was diagnosed with Parkinson’s in 2017. My symptoms have slowly gotten worse my swallowing my speech it’s hard to write because the tremors they come and go just like my speech some days I’m very good or some parts of the day I’m good all the parts I’m not good my driving not water is not so bad right now, the only thing I don’t like is my eyes don’t move back-and-forth like they should. I’ve always had trouble with that now that is worse. That’s the only thing that scares me but I like your segment it was very good stay strong and look to see more of your stories in the future. Bye for now.
Hello, thanks for saying hi and sharing a bit of your story. Symptoms can be difficult to deal with like you say. I understand. Hope to see you around the channel again.😊😁😀
When I hear this I just think about how smart and wise you are, I know it was not easy. My husband got his license revoked on our first visit to the neuroglist. He had been a professional bus driver most of his life and was a very skilled driver. He had renewed his license when he was 80 passing his written test with no problem, The first time we went to the neuologist he was 83 and he revoked his license on our first visit. my husband by that time did not really understand what happened. He did not accept it for a long time but thankfully he has finally accepted it, but I still hide the keys to the car, because a psychotic episode is always possable.
Hi Lynette, that you for sharing your PD walk, and also for your kind words. That must have been a very shocking experience when the neurologist revoked your husband's license. It sounds like there is a lot going on for your guys. My wife is planning to record a few caregiver videos in the near future. Thanks for your honest and open comments.😀😁😊
(The disease that just keeps taking). I find it more relaxing and less stressful. And I know it puts everyone else at ease that I don't drive anymore.
Hi Ann. You are right I am more relaxed not worrying about driving. It's just these Landmark events can take a lot out of a person. On the other hand I am walking more so that is a good thing. 😃😊😎
Thank you for making this video seem helpful with Parkinson's disease, sir. I commend you for being brave
Hi Martell, thank you for your kind words and for watching 😃🙂😎
The giving up my car was the hardest for me.
Once I has the paper confirming Parkinson, I took it to human resources and by the time I made it back to the Pharmacy (I was an IV technician) she said you can leave. I thought she meant for.the day. She said no you are.done. you cannot do your job with this.diagnosis
BOOM 29 year career ended in 2 sentences. I was.stunned.
I keptm
!my car.hoping thru exercise and medication I could someday drive again.
But its not possible.
I gave ot.to my. Friends brother.
He was.so.happy. pay it forward
Hi Therese, wow what a hard way to be let go. Just rip off the bandage without any warning and toss you to the side of the road. I am stunned just hearing about it.
Giving up the car for me has also been difficult. Miss the freedom.😀😁😊
That's great you were able to make someone's day with a free car. That's fantastic!😀😁😊
Oh, my foot is sooo sore after using the clutch. Takes me an hour to get home from work in slow traffic. There will come the day when I can't do it anymore
Hi Rosemary, oh my goodness, a standard must be so difficult!😁😊😀
Love the T-shirt!
Thanks Scott, here is the link for the shirt
lifewithparkinsons.ca/products/got-dopamine-crew-tee
SAVE10 save 10%
Well David, my driving journey ended close to a year ago but at the time it was a financial move not a driver's one. But in the last 7 months I was told I had Lewy Body Dementia and that driving on the highway 🛣️ was a possible risk to injure others. For me I take that responsibility very seriously. My religious belief is if I caused loss of life then I'm blood guilty before God (Gen 9:5/6 ) so in that respect it's all good I'm ok with not driving but losing that one more thing
that thing that defined my adulthood for over 40 yrs is tough. So to bring some joy back in to my life I've taken up a new hobby 😀 one that is natural to me and helps with anxiety and pain ( reborn dolls, the sweet cute ones and not the scary ones ha ha 😅
How were you tested for lewy body? I am concerned about that myself.
Hi Tory, our viewpoints on giving up the driving are very similar we don't really want to hurt ourselves or other people. That's good that you have taken up a hobby that is a lot of fun. I am getting out and walking more of which is benefiting me in every way. Yes we are saving a bit of money too which actually does help quite a bit. 😎😃😊
@toryberch How were you tested for lewy bodies? ( looks like I sent this question to myself first 😂 I'm concerned about that myself.
@@sharoncribbs7516 Hi Sharon, my diagnosis was determined by my symptoms. I started having memory issues like forgetting my neighbors names or to remember to shower
But a couple years prior to this I had auditory hallucinations though I didn't know it at the time
I thought it was normal to hear my Mom's voice calling my name or seeing a quick running mouse that wasn't really there. If you search Lewy Body Dementia association symptoms you should find several of their videos with real interviews from those with it. If I can help in any way let me know and I'll try 😊
Can you bike your way to places instead? You can get some thick tires to help you with the balance. You'd also get some exercise at the same time to increase the dopamine.
Some amino acids can help you with dopamine synthesis like l-phenylalanine and l-theanine (found in black tea).
Hi Mac, most places that I need to go I can walk. Will likely need an uber now and then in the winter. Thanks for the black tea tip. Is it caffeine free?
@@LifewithParkinsons It has about 50mg of Caffeine per cup.
@@goodczewski777 OK thanks, no caffeine for me
@@LifewithParkinsons smh
hello my friend
giving up our car must not be easy in term of independance…..
but there must be a time when its best to do it
take care
Hi Mike, it wasn't easy, but I feel more relaxed and I am walking more. So a small gain in a big loss. I'll take it!😀😁😊
@@LifewithParkinsons
kooool
did you hear the letter jeremy wrote to Parkinson
its so great
Yes, it was a great letter. I don't miss an episode from Jeremy, Love him!😀😁😊
@@LifewithParkinsons
I am also on touch with jennifer
love you all
@@MikeMercury Love Jennifer as well😀😀😃😃😊😊
I am close to the issue. I only drive direct route with out free ways. It is strange, when I get in my manual shift MX5 Miata, it’s like different pathways cut in and I drive it straight up. The worst is my old Grand MARQUIS, it is a huge cloud to drive and I do have issues. I am leaving longer and longer distance to make up for time issues.
Sorry to hear that, but I suppose it's part of this illness, thanks for sharing.😀😁😊
I'm trying to understand the "off". I find myself trying to stay in more of a highway situation versus bumper to bumper. I drive stick shift and sometimes on a hill I don't accelerate as quickly as I would like. Should I prepare myself metally to give up driving due to PD? I'd really like to understand this more. Thannks for this video. 🙂
Hi Javier, you have certainly asked me a tough question. Should 'you' prepare mentally to give up driving due to PD? If you are beginning to have problems driving, like accelerating up a hill, then I think you need to at least talk to someone. I was having problems like turning the steering wheel, so you could imagine on a corner how dangerous that could be.
Yesterday, I was driven to support group by someone with PD who is 77 years old, and then driven home by a wife of one of the PWP's who is 78. I AM 49 YEARS OLD!!!
Wow that hit me hard. I had to talk to my wife for a while before I could fall asleep. I feel more relaxed not having to worry about causing a problem others have to fix by revoking my license.
This video describes my off times fairly well. Thanks for the tough question. Keep them coming!
czcams.com/video/wwWOeWaApho/video.html
Hi David, I stopped driving about a year ago. The last time I drove was to the CVS drugstore which is about 2 miles (3.2 km) down the hill (we live in the S.F. Bay Area). We have a Tesla with Full Self Driving software; however, it's not 100% capable yet. My wife will drive from our home to our daughter's house in Oregon and let the car do about 95% of the driving. She does not have Parkinson's. I have PD and I do not want to have the slightest possibility of hurting anyone. Here's a little video of me telling my car to go park itself. czcams.com/video/ZSTpm8L9O00/video.htmlsi=u_U5UY2VoO8hmKUH
Thanks Tim. Have thought about a Tesla but it's just not in the budget. I don't blame you for your stance on not wanting any chance of hurting anyone. I agree. We are responsible for our actions. Thanks😁😊😀
My name is David a Olsen. I was diagnosed with Parkinson’s in 2017. My symptoms have gotten getting have gotten worse and now I find that I’ve always had this problem but now it’s worse my eye movement is not very good when I drive I drive good, but I have to move my head to look out the bat. You know the rearview mirror the Sideview mirrors all look around my eyes don’t automatically move by themselves. Did you have this problem as well When I’m driving I’m focused so I don’t get the tremor so much but my eye movement and and I always try to keep my concentration when I drive so luckily for now I’m still able to drive. I try not to drive too much at night did you have the same problems or were yours more of the mobility and rigidity problems when you were driving if you could give me any help they recommended that I go to a nuclear ophthalmologist. Did you have to do that as well if you could pass on any related comments or things that would help me be greatly appreciated. Thank you.
Hi David, I was diagnosed in 2017 as well, good year!
All I can suggest about making the decision to drive is that as soon as we start the engine we are responsible for our actions. So if you feel safe to drive, no worries, but if you don't feel safe, park it!
If you are having difficulty seeing what is in the mirrors then definitely see an eye specialist. For tremors, check out our latest blog post about something that could help.
www.lifewithparkinsons.ca/post/hand-tremors-temporarily-reduced-by-breakthrough-medical-device-introducing-the-vilim-ball
I hope this helps. If you would like more info you can always send an email😁😊😀. info@lifewithparkinsons.ca
👍
Hi Rory, thank you.😀😁😊
I am a separate and wheelchair-bound bedridden sling lifted everywhere in my command to be showered and toileted if I can make it to the toilet that is still in the hospital just found a nice group home and miles and Australia how about tell me a little bit about yourself get back to me by
Hi Donald, thank you for sharing a little bit about yourself and your situation. Glad you found a nice group home to live at. I hope you get the care you need. A little bit about myself, diagnosed with PD at 43, and just trying to deal with life as it comes. Here is a link to my diagnosis story if you haven't seen it.😀😁😊
czcams.com/video/HhT_k7ebDS8/video.html
Fight back! Buy a mobility scooter!
Hi Edward, thank you for the encouragement. I am getting out there and walking more today I walked 3 km this morning hopefully that is enough to start my fight back. 😊😎😃
@@LifewithParkinsons that's awesome!! My husband was just diagnosed with Parkinson's on 3/5/24. As an RN I knew from the developing symptomatology he's had for a couple of years. You seem to be doing great. God bless you sir🙏