Movement

[jannie_sh]

I have suspected that my 62 year-old mother has PD. The major symptom is her left leg. She always says she feeling the tightness and stiffness in her knee, ankle, or sometimes muscles. But the tightness is moving around, and it makes her gait (which is not a typical Parkinsonian gait, it is more like she is avoiding using her left side). She also mentioned that she walked faster and faster and has tendency hard to stop. We went to see neurologist and he would not try parkinson meds on her as her symptoms are inconclusive

- mild tremor on two left hand fingers, non-resting only when she moves her two fingers up and down

- Anxiety and depression

- slowness

- unsteady when turning corner

- lower back pain

- stiffness on neck with a confirmed spine issue

Question: do you feel your stiffness or tightness moving around on your affected side?

I am anxious and worried.. any help would be appreciated.

Thanks

Jannie

[laglag]

Did he order any tests to eliminate other things like a stroke, MS , etc.? Did he give you his thoughts on what he thought it might be? I sometimes have stiffness in my thighs. It can come & go, but it doesn't really feel like it is moving around, but as someone once described it as the "snowflake" disease, no 2 people are alike. Good luck! If it is PD, make sure she exercises. It helps a lot.

[jannie_sh in reply to laglag]

yes, the MRI seems all normal.. very mild volume lost on the brain. But Doc said it is all normal for her age.

She did MRI on her spine, it shows some spine issue on both her C and L. I dont know if that will cause some mobility issue and slowness.

[Kanu-Kamdar]

Hi jannie! I am glad he has not prescribed any PD Meds for your 62 year mother. PD meds are addictive and have many side effects. Once started the have to be taken as

long as the patient lives

Use the time to your advantage. Pls put her in a local PD Physio Therapy group and let her do the ex ercises regularly at home. She requires Motivation and you can be her Motivator. Exercise, exercise and exercise is the only wonder drug we have against PD

Good luck and God Bless

Kanu

[jannie_sh in reply to Kanu-Kamdar]

thanks for your note! I really appreciate it. She is now on some Antidepressant meds to see if it is going to help her at this stage before any firmed diagnosis.

[soup]

Jannie, as your mother's neurologist said, PD meds are not needed in the early stages of Parkinson's. Unfortunately he did not seem to be aware that the quality of life of each patient is a very personal thing and not easily measured by simple motor tests.

Non motor symptoms such as anxiety, depression, constipation etc can all have profound effects on quality of life.

When your mother's quality of life becomes poor, that is the time to begin drugs.

People with diabetes use insulin injections to replace the insulin their body no longer makes. They are not addicted to insulin. People with Parkinson's use PD drugs to replace or simulate dopamine which is not being made in the brain. The vast majority of people on these are definitely not 'addicted' to them just as people with diabetes are not 'addicted' to insulin.

Your mother should be at the centre of her treatment. What does she want?

In the meantime she would do well to do as much exercise as possible as there is evidence that this slows the progression of the symptoms. If you Google the sorts of exercises people with Parkinson's are advised to do you will be able to present some voices to your mum.

[jannie_sh in reply to soup]

She is so afraid of the PD meds as she got really bad experience last time she tried for 20 days, and the symptoms did not seem a lot of improvement. That's why she wasn't officially dx as PD yet. Now she is doing exercise which makes her feel better. Her anxiety and depression is now the biggest enemy (to my opinion), which makes whatever she has now worse.

Thanks for your note and caring! all the best to you!

[cabbagecottage]

What is her sens of smell or taste like .

What is her speech like , does she look at you blankly or often appear to ignore that you have spoken .

is she swinging both arms when she walks or leaning to one side .

Can sh draw a never ending circle or is her writing becoming very much smaller

it can take. Long time to be diagnosed took three years before they told us that he had Parkinsons , something we had suggested it was in the first place .

[jannie_sh in reply to cabbagecottage]

Thanks for your reply...

Her smell and taste seems okay at this stage two months ago. Her speech is okay from the talking on the phone. Her swing on her affected side (left) is okay but not as smooth or natural as the right side. It seems she intentionally make it swing.

Because she is right handed, and the affected side is on the left. Her writing is okay I can see... but her left hand is not as good as the right so as her complaint...

[paddyfields]

The tendency to go faster and faster in Parkinsons sufferers results from a tendency to bend forwards when walking instead of being upright and puts your mother in danger of falling I would have thought. As others have said quality of life is a subjective judgement and not for the neuro to decide. I do not think you should be left in limbo when a trial with Sinemet would at least let you know one way or the other and you can make plans for the future accordingly as far as one can given the the varied progress of PD in any individual.

It makes me query whether the neurologist is a specialist in movement disorders as the the Sinemet trial to see if it improves or even suppresses symptoms altogether is fairly standard as part of the clinical diagnosis which is main the way PD is diagnosed. It does not mean she has to take them regularly just yet if she decides not to. However, it is as well to bear in mind that the "use it or lose it principle" applies even more to PD and if she has PD its necessary to have enough symptom control to do the exercise which is so beneficial both for physical function and mental wellbeing

[jannie_sh in reply to paddyfields]

Thanks for your kind reply.

The doc gave her Madorpa (I hope I spelled right) to tried half year ago, but it didn't seem to have a lot of help, and the side effect was huge so she stopped taking it. She has been walking at least one hr per day which she said it makes her feel better. I am not sure if the Doc she saw was a movement disorder specialist or not. But he seemed not-so-convincing that my mom has PD.

My mom's situation is little bit complicated. Her majority life is in China, but she came to US to have second opinion on her symptoms, and we still got no firm answer... now she went back to China as she was so out of her comfort zone in US due to the language barrier.

Thanks again for your reply. All the best!

[jannie_sh in reply to paddyfields]

yes, she told me once she feels like something pulling her forward. I am not sure if she describe accurately though. It only happens when she walking for exercise and walk fast. She hasn't tried Sinemet as her Doc was convinced she has PD, but she was told that she could do a DaTscan only if she is willing to do.

Without knowing what is going on is the toughest part as we don't know what we deal with.

[Melodysam1890]

The major symptom is also my left leg. I have the feeling the tightness and stiffness in muscles in the back of my right leg but the unexpected movement is centered on my left side (shoulders and leg). The pain in the back of my right knee is moving around, and it makes my gait painful because I favor the right painful knee and the left leg catches the additional pressure. I notice that I walk faster and faster and it's difficult to make corners or to get around furniture - If I walked more slowly, I tend to lose my balance and walk with less steadiness. I do take Parkinson's Medications and they have helped considerably - When I was diagnosed five years ago, I was experiencing trembling primarily in my right hand, suffering from anxiety, slowing in my gait, dragging my right leg, very unsteady on my feet, severe aching in the neck, shoulders, legs and hips, difficulty with slurring in my speech, pronounced fatigue and very, very stiff muscles in my legs, arms, and feet .. and yes, I notice more that the pain in the back of my right knee moves around to the inside of my leg and that makes it very difficult to walk, stand up from a chair or bed.

[jannie_sh in reply to Melodysam1890]

so you have PD symptoms on both of your sides?

[Melodysam1890 in reply to jannie_sh]

The first trembling symptoms were on my right side but the dyskensia movements are on the left side .. Some of the meds are difficult to adjust and need changes from time-to-time - but they've given me a new lease on Life - with physical therapy, speech therapy, and water aerobics .. Good Luck to your Mom and to YOU!