1. < Parkinson's Disease

Mobility Issues

Posted by cmdw2600 @cmdw2600, Feb 21, 2023

My husband (age 72) was diagnosed with Parkinson’s about 6 years ago. I feel his progression is slow even though he would say otherwise. He is still driving and playing golf-although poorly. He does go to the gym, but he is weak and feels that he cannot improve in this area. He is of a healthy weight, maybe a bit too thin, and we have a healthy diet. He currently takes Sinemet, and a drug that is not as well known called Gocoveri. This drug seems to control what he referred to as “bobble head”. His hand tremors are pretty well controlled with the Sinemet.

My question is this: does anyone have tips for getting out of bed, getting off the sofa, getting out of the car? I’d like him to get some kind of physical therapy for these situations but am not certain how to proceed. He does not use a walker, cane or Nordic sticks.

Anything that has worked for anyone out there?

Thank you! Cindy

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cmdw2600 | @cmdw2600 | Mar 28, 2023
In reply to @1died2x "I know the frustrations. I can't open a water bottle so my wife does. I can't..." + (show)
@1died2x

I know the frustrations. I can't open a water bottle so my wife does. I can't do lots of things. I try to concentrate on what I CAN do and quit looking at who I was and concentrate on who I am. I am 78 years old and I can walk so I do. I watch my diet. I study things that interest me and I walk again. Getting old is not fun. Getting old with PD is less fun. NOT DEAD YET. Be greatful to be alive. Its tough being old with PD - do you have another choice? Watch the movies you never had a chance to watch when busy. Do it while walking on a treadmill. I know I am mean and unsympathetic. Just enjoy what you have because you will still have it happy or sad. Be happy.

Jump to this post

No, not mean at all! This is good advice. My husband and I do try to take one day at a time and focus on the positive, but I see his frustration and anxiousness about the future and as his partner in life I feel it too.

Thank for you advice and response.
Cindy

REPLY
bjleffelman | @bjleffelman | Mar 28, 2023

Hi Cindy,
For my husband the off times are very difficult as he will start to shuffle, rather than walk, his legs get very weak, his hands get numb (Neruopathy?). And he has no strength to get up or down or move. This can last a few minutes to an hour or on and off all day with different levels of immobility. If anyone else has these issues and would like to share what you have done to help with these things, please share with me, it would be so appreciated.
Barb

REPLY
1 reply
melaniego | @melaniego | Mar 28, 2023
In reply to @gina5009 "I am 92 and still pretty active although I do limit my "outings" with my son...." + (show)
@gina5009

I am 92 and still pretty active although I do limit my "outings" with my son. When I was your age, I did Aqua Areobics 5 times a week. I loved being in the water, and that is how I started my day. The water increases the resistance to about equal to lifting a 5 lb weight and it is up to you how hard you want to work. You come out of the water feeling very refreshed and ready for the day. You might give this a try.
Gind5009

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Have you been living with Parkinson's? If so, for how long? I'm 58 and just diagnosed last year. DEvastated and terrified.

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1 reply
gina5009 | @gina5009 | Mar 28, 2023

No, I have had cancer. I had breast cancer when I was 36, and a dermatofibroma in 1988. I have learned to accept, I will be here as long as God decides I need to be here. So I better take advantage and have the very best life I can. If I spend what I have on anxiety and fear I will have wasted what has been given to me. There are so many new medications, and so many more on the drawing board. Your chances of medicine finding you a cure in a very short time is a bright future on the horizon. I use to work for a doctor (Medical Transcriptionist) and I remember him saying way back then that because of Computers, medicine was advancing in 5 years what it use to take 50 years to do. Get what information you can, and then decide what would make you happiest now and then do it. Let tomorrow take care of itself. I know, easy for me to say, but you will find happiness is at your fingertips. Grasp it tight, Smile, and be on your way.
Gina5009

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mickey1 | @mickey1 | Mar 30, 2023

try a Bedcaddie, a bed bar not too wide to grasp if needed. try using a suv as leaving car you are going down with your legs, much easier than exiting a sdean.

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Idied2x | @1died2x | Mar 30, 2023
In reply to @melaniego "Have you been living with Parkinson's? If so, for how long? I'm 58 and just diagnosed..." + (show)
@melaniego

Have you been living with Parkinson's? If so, for how long? I'm 58 and just diagnosed last year. DEvastated and terrified.

Jump to this post

I am 78 and diagnosed 2 years ago but had symptoms before that. This may sound rediculous but try not to be devastated and terrified. MJF has lived with it for 30 plus years. Its another bump in the road. Better to look at it like a challenge and try to make a contest out of it - anything that will pit you against it instead of giving up and giving in. I have down days but most days I take a walk and think about how I am triumphing over the averages. On occasion I fall. a friend wears a bicycle helmet when he walks so if he falls he does not bang his head. We must each fight it in our own way but not just give in. Never give in.

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1 reply
bjleffelman | @bjleffelman | Mar 30, 2023

Hi Cindy,

My husband uses rope ladder attached to end of bed to pull himself up or uses the small side rail that is about 12-15 inches wide and he is able to turn to his side and bring legs up and over the side. The support arms go between the mattress and box spring. These are all on Amazon.

REPLY
ablema1 | @ablema1 | Mar 31, 2023
In reply to @bjleffelman "Hi Cindy, For my husband the off times are very difficult as he will start to..." + (show)
@bjleffelman

Hi Cindy,
For my husband the off times are very difficult as he will start to shuffle, rather than walk, his legs get very weak, his hands get numb (Neruopathy?). And he has no strength to get up or down or move. This can last a few minutes to an hour or on and off all day with different levels of immobility. If anyone else has these issues and would like to share what you have done to help with these things, please share with me, it would be so appreciated.
Barb

Jump to this post

My sister who has similar issues + fluctuating BP was prescribed Mestinon to improve muscle strength. She takes I/2 tablet 3 x d/. Seems to help. Also started with first Vit B12 injection-suppose to help same issue according to some PD patients .

REPLY
ablema1 | @ablema1 | Mar 31, 2023

Parkinsons Resources. New Trends 3.202/Vit B 12 Benefit for PD 2023-03-21 at 8.41.26
/Parkinsons Resources.New Trends 3.202/Vit B 12 Mayo Clinic.pdf

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1 reply
cmdw2600 | @cmdw2600 | Apr 1, 2023
In reply to @ablema1 "Parkinsons Resources. New Trends 3.202/Vit B 12 Benefit for PD 2023-03-21 at 8.41.26 /Parkinsons Resources.New Trends..." + (show)
@ablema1

Parkinsons Resources. New Trends 3.202/Vit B 12 Benefit for PD 2023-03-21 at 8.41.26
/Parkinsons Resources.New Trends 3.202/Vit B 12 Mayo Clinic.pdf

Jump to this post

Thank you!! Cindy

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