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Topic Tremor or no Tremor - is it really PD? Go to previous topic Go to next topic Go to higher level

By dkleinert On 2013.01.25 19:47
My husband was dx with PD 8 years ago in December. His tremor was only in his right hand and side then, however, over the next few years it progressed to his left hand and side also. Then it stopped. Right now, the only tremor we ever notice is if he is really, really nervous about something, then his right hand has a slight tremor. He has all the other symptoms: droppy facial muscles "mask" of PD, stooped posture, shuffling gait, freezing gait, dementia, lose of strength and endurance, fatigue, sleep issues, incontinent issues, drooling, trouble with various tyes of movements, takes him a long time to chew and eat, everything seems to be in slow motion for him, personality changes, loss of executive decision abilities, etc. He has awful balance issues, and falls often. He has to use a cane and sometimes his walker because of his strength and balance.

So, the neurologist has never mentinoned anything about the lack of tremor. What do you all think? Is it just because he is in Stage 4 now that the tremor has almost gone away? Or does he really have PD or something else and has been misdiagnosed? What is your experience? Your thoughts?

By Trusting On 2013.01.25 21:35
My husband doesn't have much of a tremor either. Just his right arm and mostly when resting. That's why it took them so long to diagnose. It was all the other symptons you listed that when put together says PD. When I took all these symptoms and gave them to his dr. she said, I think you're right. Immediately he was sent to a nuerologist and he gave the dx. The doctors had been treating different symptoms but had never put them all together.

The slow movements and pain is what he suffers with the most right now. As I read this forum I realize this can change at anytime. I would also like to hear from more who's partners are like ours. Slow movement but not many tremors.

By mylove On 2013.01.25 22:46
My ears perked up when you said "slow movement and pain". That's my husband to a T. He's got the 'slow' type rather than the 'tremor' type. So far the slow symptoms have been merely irritating but not disabling. It's the pain.

Can you tell me more about what kind of pain your husband has? It's the single most debilitating feature that we've experienced, and so far I've heard very little specific about pain other than "Oh, there's no pain in PD" from the doctors and "OH YES THERE IS (but no elaboration)" from the patients/caregivers.

By dkleinert On 2013.01.26 00:19
My husband used to be in lots of pain....he had shoulder pain, back and leg pain, and he was/is just so stiff all over. He had repeated cortisone and other types shots in his shoulder and finally, for some unknown reason, the pain stopped. He had again, repeated shots of one kind or another for 3 years in his back and finally had the stenosis surgery, and it worked! Amazing. Now he really is not in much pain except from the arm that he broke from a fall 3 years ago. It aches from time to time he says, but other than that, he is pretty much pain free. He lived through about 6 of the last 8 years with debilitating pain. So explore what is causing the pain. We went to different docs - Orthopedic types - until we found out what was wrong and went for the shots, then surgery. It was a long process with many, many doc and hospital visits, but now it has been worth it. I think if he was still in as much pain as he used to be, and now with his freezing being so bad, and such slowness of movement, he probably would be in a wheelchair. It is worth the trouble to figure out where it is coming from.

By carman96 On 2013.01.26 05:17
Ditto to most of the above. He hasn't had back surgery but luckily the last cortisone shot worked well so at least his pain is mostly gone for the time being.
He doesn't have tremors either. But he is slow as molasses most of the time along with most of the other symptoms.

By daisy On 2013.01.26 06:58
My DH has never had any tremor either. His is the akinetic "rigid" type of PD. He also has extreme pain, except when well medicated.

By jaxrock On 2013.01.26 08:19
My husband does not have external tremors either........never did...

He was diagnosed 10 years ago......I'm sure he had PD longer, tho.

We were told he has internal tremors..........and he verifies that....says he feels tremors inside almost all the time............

It's another exhausting symptom of his PD -

He also has pain..........in different areas of his body....and at different times....

What a roller coaster we're all on!

By dkleinert On 2013.01.26 11:12
THANKS to all of you. I feel so much better knowing we are not an anomaly. His Neuro never told us there were different types of PD. BIG HUGS to all of you - I could not be on this journey and do it even partially well without you!

By LOHENGR1N On 2013.01.26 15:53
D, i don't know why His Neurologist never told you about PD without tremor. I is common knowledge for years in leaflets and online sites that about 30% of People diagnosed with PD do not exhibit tremor.

By mylove On 2013.01.26 22:06
...and here we are checking back in again after spending three hours at the walk in clinic once more today, for, you guessed it - PAIN.

The really crappy thing is that the doctor was convinced - absolutely convinced, you could see it in her face - that she was about to make a phone call and send him up to the hospital for an appendectomy. Then she ran the blood and did a CT, and lo and behold there were the results we always get: normal, normal and normal. I just don't understand how he can run the fever, feel crappy, have pain in all the appropriate areas, nausea, cold chills, and have positive rebound test results and still not have anything that can be pointed to and treated.

Is PD just the best mimic in the entire universe? Are we just destined to spend the rest of his life with him on narcotics to combat the pain?

By tipplelady On 2013.01.27 14:19
Pain, not much tremor at all, more pain. My husband has to be watched carefully when on pain meds, he forgets he took them or just wants more because they don't really stop the pain. Most of the time he moves, and I know you all believe me, just like on TV, when they film in slow motion. It is hard to believe, unless you see it, just how slowly a person can move. He says he doesn't have the freezing, he is just pausing, yet it looks like freezing to me. I wish they could give him a pain med that helps the pain and doesn't make him a zombie. I wish for you all better success than I am currently having dealing with a PD husband who thinks there is nothing wrong with him.

By dkleinert On 2013.01.30 00:36
I have to post this so everyone will see it, and I will do a separate post also. Please go online and read about Curcumin. It is the active ingredient in the tumeric spice. There has been so much research on it, and how it greatly reduces pain. I have had a lot of arthritis pain lately - almost not able to walk. My chiropractor gave up on me. Then I saw an edition of Life Extension Magazine and it highlighted recent research about the efficacy of curcumin used in high doses and its affect on inflamation and pain. So, I went straight to Whole Foods and bought some. The article said that 500mg, 3 times a day has an affect. I took double that amount, and it is AMAZING how it helps. I have found that I have to take it 3 times a day. I take it soon as I get up, during the day sometime, and then again at bedtime. It works!!! I take 2, 500mg capsules. Please try this - it cannot hurt anyone - there are no side effects. Be sure when you are buying it that you read the label and that there is at least 450mg of Curcumin/capsule. I have since read a lot more about it, and it is a miraculous healer of pain and inflammation. Try it for your husbands.....it can't hurt at all. I hope this helps even just one of you.

By Trusting On 2013.01.30 20:56
My husbands pain moves. Sometimes it's legs, arms, neck, back, etc. He seems to be doing a little better since beginning some exercises from a physical therapist. They are stretching him out. If we go on a long walk he will be sore the next day, if he lifts anything heavy he is in severe back pain.

The slow movement drives me crazy. I could never keep up with him on a walk but now I am constantly waiting. It takes him around 40 minutes to dress in the morning and that is without showering. I admit I'm not the most patient person in the world and have to remind myself often it is sickness not just him being purposely slow.

So far he tries not to take the tylenol with codeine b/c it makes him so sleepy and he hates that feeling but when he takes it I know he's in extreme pain.

By mytngenes On 2013.02.06 09:30
My husband (dx'd 14yrs ago at the age of 46) also has never had a tremor. I think the lack of a tremor is what took so long for the diagnosis (4 yrs). He also has lots of shoulder and upper back pain. He's in constant pain and nothing seems to ease it. I will definitely look in to the curcumin. Thank you for posting about it.

By karolinakitty On 2013.02.12 11:20
I want to share a video with you our good frined bev did for the Neuro Film Festival this year....some of the people in her video DID NOT have tremors, most had shoulder and backpain.....most took on the average of 5-7 years to be diagnosed ALL were YOPD..

This is her blog on it:

http://parkinsonshumor.blogspot.com/2013/02/young-onset-parkinsons-disease.html

Here is the video:

http://www.youtube.com/watch?v=bORl_ZOQTug&list=PLYNSC2T2aPD4DpynMHcbjPEU4UkCJWYmc&index=22

By mytngenes On 2013.02.12 14:36
Great video!! Classic stories of misdiagnosis of YOPD. Thank you Bev for creating this video, raising awareness and getting the message out there!

And thank you, karolinakitty for sharing this video!


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