I have a different question on driving..why can’t I back up our car... so frustrating! Is it another symptom of Parkinson’s or another side effect of Miraplex. Our lease on our car is done in 6 mo. and if I can’t do this I won’t be able to get another car. Is this Parkinsons or lack of confidence. I can drive forward, but not backwards.
Driving: I have a different question on... - Cure Parkinson's
Driving
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12Maxwell3
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I was stopped from driving when I was diagnosed first by GP and Neruo confirmed. I had symptoms of PD for about 7 years before I was diagnosed. No one worried about my driving then and I could reverse but I will admit not as good.
WHY are you unable to back up your car?
I really don’t know.. I can’t even know what direction to turn the steering wheel. This will probably be the hardest to give up because my independence is gone.
I’m so angry right now and hate this disease with a passion! I know I’m feeling sorry for myself, and usually I’m not this way. So many on here have it so much worse then I do and my heart truely goes out to you all.. not sure what I would do without all of you! Thanks for listening to an old woman ramble... lol
OK, so you forgot how. I have a routine where I climb rocks - forgot all my moves - muscle memory - due to PD. I got right back on the rocks and re-learned and got the gift of greater awareness.
What you need to do is go practice on a big empty parking lot or other such space where you won't cause any damage. Practice till you get the hang of it and get your confidence back!
Park Bea , is right practice makes ,"passable" you may never make perfect again but keep on trying. I have attempted it with running and now do a passable job. Don't give up. I still drive but have problems looking over my shoulder even at T junction s
I find backing up the most difficult thing to do when I drive. When possible I pull through a spot so I don't have to back out. I find my issue is perception. I'm not always sure that I'm clear to back out even when I don't see anyone coming. I found aricept helpful for my attention when driving. I can understand your frustration. Driving is a key part of being independent and the thought of losing that is frightening. I agree with the suggestion that practicing might help. Many of the behaviors we take for granted go by the wayside with PD. You may have to relearn the process but it can be done. Don't give up without trying. It's very hard to have to focus on things you always did automatically but in the end it's worth it to maintain your quality of life.
Thank you!
I've found a "backup camera" in our new car very helpful. I've also noticed that some of the newest (and probably more expensive models) not only show you the view out the back... but also project on top of the picture the trajectory of the vehicle based on how your front wheels are turned. Its quite helpful. If you're lease is about to expire you might chose a car with backup camera.
Parkinson's Disease Foundation has a good thing to watch about PD and Driving at pdf.org/parkinson_briefing_...
I have collected a half dozen articles on PD and Driving which I would be happy to email to you if you email me your email address.
There are courses for PD folks to spruce up their skills. There are also judgement criteria to use to determine when and if its time to hand over the keys . . .
Frank.mundo@gmail.com
My email is ... dmcrain60@gmail.com
FMundo, I have also found that a backup camera is not just helpful, but essential. My partner installed it in my no frills 2011 Toyota Corolla three years ago. I wasn't diagnosed then but was having problems turning to back up which I attributed to arthritis in my neck. I now mostly back into parking spaces or pull forward so that I don't have to back out into traffic. This gosh darn folks who whiz around parking lots are a problem! I also park far enough away so that I'm not hemmed in on either side. If in spite of my efforts to avoid congested areas I end up in one, I'm not too proud to ask a friend to guide me out!
The ability to move backwards is a neurological issue. Our grandson had severe brain damage from meningitis and did not move backwards...something we didn't even notice until one day, it changed. We did equine therapy with him and the day we put him on the saddle backwards, we got a huge surprise. That night in our kitchen, he took a step backwards and squealed in delight. He kept doing it and we realized he had not been doing it prior to that day. Doing a backwards movement on the horse retriggered the brain and that movement carried over to other situations. We saw that a lot with him. Up and over into the saddle carried over to up to spontaneously being able to up and over the low balance beam in the playground.
For years it was believed that the brain led all movement and while that is true, you will see modern rehab using repetitive motion of the limb (etc) to inform the brain. Like rewiring.
There are so many neuro issues in PD. You may be able to make the actual motion inform and re teach the brain by deliberately doing the movement in a setting other than the car. You will have to break the exercise down into individual small parts. Perfect one, then add another, perfect those, then add another and so on until you get the complete motion under control.
The problem with driving is that when you think about it, driving requires a huge amount of coordination and integration of body systems just to do basic stuff. We take all that for granted but think about all these things that one has to do in order just to drive forward:
1. Speed up/slow down, using two things...gas and brake
2. Anticipate oncoming traffic.
3. Anticipate traffic behind and in front of you...how fast are they going
4. Deal with cars passing you
5. Decide when and how to change lanes
6. Decide when and how to re-enter your lane
7. Constantly glance at rear view mirrors, in the car and on the sides
8. If your lights and windshield wipers aren't automatic, you have to judge when and how to use them
9. Adjust speeds
10. Use turn signals
All the actions use varying aspects of the neurological system and they must all integrate in order to perform the task of driving. Furthermore, they all require judgement calls, body movements and visual movements.
I am sure the first advice your doctor gave you was to do one thing at a time....this is why....what we take for granted as an action is a complicated series of smaller actions which must all sync.
Oh my goodness! Thank you so much! I will call the stables! At least you’ve given me Hope! Many thanks!
No need for all that...just the principle of finding something which makes you move backwards.
The stables will not allow me to sit backwards on the horse for safety purposes. I can see their point.
Yes....this was a rehab program. We had a person on each side and one leading the horse...that's why you have to think of something else that does the same thing.
Any suggestions ?
Maybe using a walker and moving backwards? Or having someone wheel you around backwards in a wheelchair? Anything that makes you move backward. If you are steady, maybe walking backwards as a regular exercise? If it works in PD patients, it will probably be a temporary victory...the intense fatigue that comes with your body trying to integrate the systems gets to be overwhelming. Think of how tired one would get trying to hop backwards on one foot while swinging the other leg while eating a sandwich while twirling a sparkler. ...too much unorganized stimulation. Nevertheless you have to try everything and you have to keep it up daily if it works. I have a good number of posts on this site if you look....we tried everything everywhere and I have reported on our experiences.
Do one thing at a time. When you have control over each of two connected skills, you can try to put them together. Eyes are a big factor in movement...PDers don't blink as often as normal people and blinking serves a purpose but I don't know what it is other than to give the eyes a little rest and moisturizer them. Exercises to keep the core of your body strong. We use the core to determine and maintain balance but when we get older or I believe with PD, the core gets weak and we start using our eyes to do that job. This is a main reason old people fall.... they are. Of using their. Ore but their eyes for balance. Hard to find exercises to strengthen the core but a rehab person could tell you.
It occurs to me that horseback riding must strengthen the core muscles so maybe that is what happened with our grandchild.
Wow! So much to take in. I just tried walking backwards and fell right down. lol With recently being diagnosed everything is so overwhelming, but like you said, I will do anything I can do to make my body stronger. The fatigue is unreal.. walking acrossed the kitchen is like having heavy weights on both legs, you have to push and push to get to the sink, stove or microwave. At the stables they keep wanting me to build up my core, it’s harder then anyone would think. They also are having me do arm exercises to build them up, all of these things together are helping to be able to sit on this horse. My balance is so off especially when holding the reins instead of the horn. I’m to stare straight ahead to guide the horse, but when I do my balance is really off, and my biggest fear is falling.
Why is there so much depression with Parkinson’s, I feel most of the time like I’m in a hole and just can’t get out. I’ve cried more in the last 3 mo then ever before..my body will not even put my left leg into the stirrup without help..same with backing up the car, my husband stands out there and directs me and by the time I have backed out, the sweat and exhaustion is such that sometimes I drive the car back in the car just shaking. Thanks for sharing I will continue to work as hard as I can to be able to do the things you have suggested.
I believe the fatigue is due to the intense effort needed to integrate the various systems needed to perform a task.
Naughty girl, Did I not tell you to move backwards with some sort of aid...a walker, a wheelchair, a helper holding your hands. Do it for four steps and stop. Wait for recovery, do four more. Gradually work up by dividing it up and doing just a limited number at a time for short periods.
I can tell you what we used VERY successfully for depression which my husband fought for years. Theanine. He started at 100mg every 4 hrs beginning upon arising and all day until after dinner. He had a major sleep problem and couldn't take it later without staying up. Then he titrated up by 100mg every few days to find his dose. It turned out to be 400mg every 4 hrs with 400mg after dinner and no more until the next day.
If you use this, please note the spelling...there is also threanine which is entirely different.
Theanine is a substance in tea which is calming...guess that's why the brits drink tea at every emergency.
The other wonderful supplement is oil of lavender capsules sold by Integrative Therapeutics. Works quickly to calm. Directionssay 1 per day but when I asked the doc about using more, he laughed and said to take whatever you need. Once Don got on theanine, he hardly ever used it unless he got really upset over something and got overwhelmed. I use it if I get too excited before bedtime and can't get to sleep.
Yes, I did try very slowly to walk backwards and unfortunately my balance is so off I fell.. didn’t hurt myself at all.. that was with my stroller. I will keep trying, but I lose my balance so easily.
My husband wants to work with me backing the car out of the garage... we live on a turn around.. he is working with me every day.. not doing very well.
It may be that you can't change the neurology but you sure should try because maybe you can get a temporary improvement and some is better than none.
Go to rehab...they have a lot of techniques to help all sorts of problems. R u in the US or U.K.?
I got interrupted in my last msg. We also used dimethyl glycine (pangamic acid). I used it for severe inner ear equilibrium problems and also gave it to my little grandson with neurological damage. I think it is supposed to get more oxygen to the brain...whatever it did, it worked. We used Aangamik by FoodScience of Vermont...expensive but very effective for us.
I believe the intense fatigue that Don had was due to an interruption to the Krebs energy cycle(look it up). His staton drug used one of the pathways used by the chemicals which join to create energy. We eliminated the station and supplemented with CoEnzyme Q 10...the chemical being squeezed out by statins. Now this is routinely recommended by cardio docs. But I think all the elements involved in Krebs are important to take for people who suffer PD fatigue. A terrific, well priced CoQ10 is quinol from Costco.
Don had hyperbaric oxygen treatments and the first thing he noticed was the fatigue in his thighs was relieved.
A major factor was sleep apnea which we didn't get diagnosed until way too late but I am convinced it played a huge role in progress of his disease. Easy to diagnose...they use a finger monitor overnight. Then if it shows apnea, you get a C-pap mask to use when sleeping...it forces air into the nostrils to keep you breathing regularly. Two kinds of apneas, sometimes appearing simultaneously...instructional (areas behind nostrils collapse when you lie down) and neurological (brain periodically stops sending messages to body telling it to breathe. Shocking how many people have this.
If you are in the U.K. Under socialized medicine, you will probably have a difficult time accessing some of these treatments. I always feel bad writing to Brits due to the limitations of the medical system and the expense of doing many of the things we did, both inside and outside of our insurance.
If you have a friend or relative who can qualify as a health care professional, maybe they can establish an account with some supplement houses. I prefer PureEncapsulations which has an excellent and high quality line. Their Ultimate multivitamin/mineral is one of the best...a must. They also make electrolyte powder which can be mixed in water and is very palatable. Remember, electrolytes keep the electrical system working properly and the neuro system is electrical. Dons doctor recommended he take them 2x a day at least.
We used Zandopa instead of Sinemet for a long time to put off the side effects of the drug. Generally, neuro drugs can wear out their effectiveness and have to be replaced by stronger and stronger drugs with stronger and stronger side effects. Eventually, Don used the new med Rytary with great success. Many docs do NOT know how to use this...they try to use it like the old drugs but the dosing is entirely different. The company has a service agent who can discuss this with you.
A lot to consider, right? But I think there are a lot of supplements PD people need...just like old people, we are running out of our ability to metabolize and use nutrients and the need to be enhanced.
Coconut oil was extremely helpful in the energy area. Do not buy liquid. Do not put it in the fridge. We Started slowly and worked up to 2 T every four hours. It takes about 4-6 hours for it to convert to energy so started early in the day. It can be put on hot cereal but Don just took it in a little paper cup down the hatch after I put it in the microwave for 3-4 seconds. It melts fast and you don't want hot oil. This info will lead you to the Keto diet which is similar to that in Fiber Menace and I believe to be an excellent way to control the electrical systems.
Books I like:
Drug muggers by Suzy Cohen
Fiber Menace by K. Monastysky
Alzheimer's Disease or any coconut oil book by Mary Newport..can probably get the same info by googling her.
Sure you have noticed Don as being in the past....he died last Thankgiving but not of PD. He had a serious heart condition brought on by his panic attacks...hardening of the walls of the heart, along with a terrible case of atherosclerosis and some sort of inability to extract energy from carbs(hence the use of coconut oil since when we can't use carbs, we resort to getting energy from fat). Read up on equine 'tying up'...polysaccharide myopathy or rhabdomyolosis. So his case was very complicated but I believe all connected.
I loved him so much and miss my laughing and eating partner who trusted me implicitly not to poison him with all the stuff we tried...and we tried EVERYTHING!
Even if it isn't your thing...you must educate yourself re PD and alternative treatments if you want to get control over it.
PD is weird Another person n found that if he froze he could walk backwards better. My friend has a car which reverse parks itself and also tells you if you are about to nod off.!
Hi I have pd was diagnosed 8 year ago I have 2 horses I try to ride most days except when I'm on holiday When I'm on my horse I can ride for hours and feel normal I can gallop jump hunt it's only when I get off the symptoms hit me if I could live on my horse I would !!!
I’m in such a depression these days.. I too, wish I could jump on a horse and forget everything even for a little while, but I don’t know how to ride, yet.. lol
The only peace I seem to have is going to the stables and spending time with Bullet..(horse), and all my friends there.
Horse therapy is so amazing and even at 66 yrs old, I hope to learn to ride.
The symptoms are really hard, aren’t they? My insides are so mixed up. I know everything I’m feeling is all Parkinsons and this has only been diagnosed 6 mo. How have you done it for 8 yrs? Can you share you’re story with me?
Hi where do you live I'm in uk. I've ridden all my life I have two horses and ride with my daughter but sometimes alone I live my horses I used to own a livery yard and I competed st dressage on a national level. I now mostly pleasure ride but aim to start showjumping on one of my horses. I hardly ever used to fall in my prime but now fall off quite a bit last year was thrown and snapped my ankle clean off but 2 ops and a year later I'm back riding hunting and jumping. I was diagnosed 8 years ago started with s tremor. I'm fought hard with disease to keep it st bay riding keeps me strong along with all stable duties. I do struggle I've had 2 knee replacements as well but still keep going. I get slow and severe stiffness sometimes I can barely put one foot in front of the other but once on the horse I'm me free from pd. I can ride for hours and feel normal but when I jump off the stiffness hits me. I will ride till I have my last breath. Hopes you learn to ride horses are amazing I'm 56 btw.
I went to see and groom my therapy horse yesterday! He and being around the staff gives me such peace!
I have problem to keep my feets still my PD Constantly make me to pusch then not pusch the pedal . I m from SWEDEB
Isn’t it strange how our reflexes and things that our brain used to guide us has kind of slowed down our daily tasks that we used to do without thinking. I was at the pool the other day and there were only 5 of us there... and one lady looked at me and without any hesitation said if I knew you were driving this morning I would have stayed home. I can drive forward fine, but to back into a parking spot I can’t, so the manager of the pool automatically does it for me. Some days it kind of hurts.. the pool is 3 blocks from our house and the Neurologist gave me permission
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