When did people first notice hand tremors? Did they continue to get worse? Did anything help? How much did they affect daily activities? What was the next symptom after that and how long was the time between? I know that some of that is covered in the Natural History articles, but I wanted to hear some personal stories.
Thanks, Tony

Hi Tony. I have had KD now for almost 10 years. Hand tremors started probably within 4 years, unfortunately it is a slow progression. I am now much worse, holding a cup of coffee without spilling any is impossible on some days. Another time I might drop food from a fork or hit my teeth with a fork when eating. Likewise I might drop things such as paper, pen even the phone. There are good days and bad days but overall it is a slow decline. Sorry to be so sombre. I'm not really!
Best Wishes.

Hello! Ihave had the KD diagnos for three years (i´m 49 years, living in Finland, if you know where that is))
My hand tremor started whewn i was thirty, BUT i am eating beta-blockers (propranol)and that really helps. No shaking when i take the pills!

At age 39 (6 years since onset) I have not notices any tremor. I have difficulty holding coffee in my left hand, but I am just as steady as when I was in my 20's. I have always had a very slight quiver since I was young.

My husband had noticeable hand tremors about 1997. I recall the approx. date as my own father had Parkinson's and when Bob started with tremors that was the first thing I thought of. He began tripping about 2005 or a bit before, breaking his hip in 2006.

His hands don't shake like they used to but he does have problems taking photos if the camera doesn't have stabilization.

Hi Tony, i have had a slight tremor for as long as i can remember. Because my grandfather also had tremors, it was dianosed as a familial tremor. I have taken a few different medicines. Propanelol controled the tremor the best, but i felt like a slug when on it. I currently have a prescription for atenelol, that i take as needed.

I found that exercise and avoiding stimulants, like caffiene, help reduce the tremors without the side effects that come with medication.

At about 30 years old for me my left hand started with a very slight tremor that I noticed, I am now 43 the left hand tremor is noticeable now when drinking or eating my right hand has the very slight tremor my left started with now.

My symptoms now are my knees hurt bad my left knee i can not crouch down like a catcher cause the pain is so severe and my feet ache bad after long walking.

I look and feel fine in every other aspect and if you saw me walking on the street you would say that guy looks in pretty good shape but no knees are killing me I can still run and climb stairs just pain associated with it lately. Oh yea I get winded so much easier now climbing 3-5 flights of stairs I feel like I ran up 10 flights out of breath bad.

This sound familiar to anyone?

dorsey, I can relate to the feet ache. My knees are fine, but climbing stairs or running are not possible anymore. Amazing how differently the KD affects us all.

This message has been edited. Last edited by: jameson411,

I would like to thank everyone for their responses!

I know that intentional tremor is a KD symptom, however I have a different type of tremor that starts in the very early morning that is like my alarm clock. I get a vibration in my shoulders and chest area (feels more like in my soul) and it is so annoying that I cannot return back to sleep. It is worse some mornings and not present at others. At times it has me shaking so bad my teeth chatter. I describe it to like having an electric cord plugged into me.

I am wondering if this would be a proximal tremor or not?

When I get excited or anxious I shake pretty hard and feels like I am going to bounce out of my skin. I am unable to handle much stress without getting in bad shape. Unfortunately my attitude changes along w/ the shaking. It is like a snowball. I calm down w/ 1mg xanax that calms me and the tremors. My hands alone shake often but never constantly. I do not have intentional tremor but if I flex my arm in an L shape I will begin to shake at the shoulder and elbow. The right is more remarkable than the left. I suffer from being very clumsy and cannot preform fine motor task. My daughter freaks if I pick up her camera.

I have been diagnosed w/ anxiety/panic disorder but I do not have any worry thoughts or concerns when the shaking begins. It just comes out of the blue. It feels like I am hanging from the edge of a building sometimes but nothing has triggered the sensation other than it can escalate when stressed. I feel more debilitated by the tremor than the fatigue, pain and cramps as it effects my disposition so much. I cannot work w/ my mind or my body without either getting out of wack.

I have a maternal half brother who has a constant hand tremor and claims to have always had it. He has no other complaints but he is only 34. I told him if I am tested positive for KD he may need tested also but he said "No thank you". He would rather not know. My blood brother(48) is unable to grow a beard or mustache and has sensitive nipples. He said he will pass on the genetic testing as well.

Your comments are more than welcome!

Sagemark, tremors have been part of my life since my earliest memory. As a child, my friends noticed my shaking hands and would often form a circle with me and we would all hold out our hands at arms length and mine would be ever so slightly but noticeably moving.

As a teenager and young adult it was dismissed as a familial tremor, because my grandfather had tremors.

In my 20's I got the reputation of being a nervous person because the tremors no longer occurred only in my hands or only when outstretched. Standing for a period of time caused noticeable tremors in my whole body. Running, racquetball, sports, caused uncontrollable shaking. Stress, anger, any strong emotion, the same thing.

I started college at 29, as a divorced custodial father of two young children (5 & 4). I was a full time student, president of the daycare coop, played racquetball 2 - 3 times/week, and worked part-time in the dept of education. At night I would wake up feeling like my bed was shaking uncontrollably, the first time I thought it was mild earthquake. As it became a regular occurrence, I realized it was me.

I graduated at 32, with a BS in Occupational Safety. I worked as a Safety Manager in a factory for two years and in a Stone Mine/Road Construction Company for six years. I loved working in the mines and construction sites. But, I kept getting weaker and weaker. My tremors were becoming more pronounced. I was avoiding climbing onto some of the highest conveyors and elevations. The night shakes were back. It was during this time, that my wife put all of my symptoms into google and found the KDA and we went to my Dr. Shortly after, I was offered a promotion. I told my boss to wait until after my blood tests came back. The tests came back positive for KD.

The reason I am telling you all of this is because, my tremors were so bad that my wife took video to show my neurologist. I would come home from work and lie on the bed and shake uncontrollably. It look and felt like I was having a seizure. When I held/hold my arms in an L shape, the shake making typing very difficult. When my neurologist saw the video and learned of the physical and stressful nature of my work, she explained that the shaking I was experiencing was extreme muscle fatigue. I went on disability at 40 years old. Much younger than many men with KD.

The decision to go on disability at such a young age was a difficult one made by my wife, my employer, my neurologist, and me. It required a change in my standard of living. But, it improved my quality of life.

This is just my experience. Not everything is related to KD. But our weakened muscles do react to stress and exertion very differently than healthy muscles do.

I was diagnosed with KD at age 56 but recall having hand tremors in my 20's primarily when using a screwdriver. Something as simple as putting a switchplate back on the wall was and still is a frustrating experience. I also notice that stress brings on more tremors and the "feeling excited" or shaking when nervous (like right before starting a business presentation). This seemed to have always been part of my life.
Stress avoidance was a factor in my decision to retire when faced with job relocation. The thought of moving and all that it entails or the stress of looking for a new job less attractive than figuring out how to make retiring early work.

Thank you for your comments, It is so helpful to know I'm not in the boat alone.
Dave I spent 6 hours trying to fix a head lamp on a car that should have taken 15 mins. Yes, definitely frustrating. This due to loosing the dexterity in my hands and not being able to fineness the clip into place.
Pocatello Jim, It never occurred to have anyone look to see/feel if I was physically shaking or not. It feels like such an internal vibration. Now on really rough mornings, yes, I am visibly trembling and knock over everything in the cabinets as I reach for my morning meds and coffee cup. Of course the faciculations are rarely observed by the Dr.s and I feel, never taken into account. However My last Dr that found the tongue faci's. He also got to witness the facial twitching as well. In fact my EMG and NCT is tomorrow w/ a follow up on the 7th. (MY past results showed carpal tunnel, then double crush, then polyneuropathy).