Poll....

[Buckeye7]

Which hand is affected......your dominately used hand or the opposite one? Peg was left handed......but her right hand and side was her weak/stiff side buckeye7 jan

[jzygirl]

Good question. Brian right handed and its right side thats affected. Hand clawed arm bent and locked leg numb and weak.

Janexx

[Hidden]

Chris is right-handed and his left side is affected - hand clawed, arm often in mid air, bent at the elbow; foot dystonic and whole left side very weak.

[Heady]

Hi, my husband is right handed. He is weaker on the left, but he did have a stroke 4 years ago, on the right side of brain. Although, he had no noticeable physical problems! The consultant says, he has equal measure of stiffness on both sides! The left hand, does try to claw, now and again. Was almost clawed last year, but he broke his right wrist, so had to use his left hand. Within a few days the left hand was back working properly!!! No wonder the powers at B, have so much trouble trying to work out how the brain works. Nothing about it is simple.

Lots of love

Heady

[Buckeye7 in reply to Heady]

Thank you....we will keepibg trying to figure things out. Take care! Buckeye7

[Heady in reply to Buckeye7]

Hi, are you doing official research, or is this just to help understand? Well done, which ever way!

Lots of love

Heady

[Buckeye7 in reply to Heady]

Heady, this is just personal research. I constantly tried to learn everything I could aboutMSA, PSP and CBGD, while trying to find answers for my mother in law, Peg. Her diagnosis was changed 4 times during her illness. She was diagnosed with each of these.....one doctor early told her it was psychosomatic or basically all in her head. Doctors and health care providers are still so baffled by these afflictions. I feel the more documenting and putting our information may not totally prove anything, but I am hoping if we could providemedical researchers with info, some may pick up on sonething behind this data and scientifically take it to a new direction and use it as a springboard to find out sonething.....anything that may bring us 1 step closer to some answers. My son did biological research and he inspires me. Peg died in June and I just can't walk away knowing how much anguish and questions are out there. These support sites have opened my heart up to each of you. I pray continually for comfort. Please encourage everyone to share all they canfor the cause. You asked a simple question, I apologize for this long winded answer. The tears are flowing as I respond. Thank you Heady for caring. Jan/ buckeye7

[Heady in reply to Buckeye7]

Hi Jan,

I know what you mean about the professionals being baffled by PSP. My own little theory, is they are looking in the wrong place. I know for a fact that my husband has had PSP for at least 20years! Going back over the symptoms I now know as this evil disease, his driving certainly started going down hill then. Spacial awareness going! There are lots of memories, when he would suddenly flare up for no reason, because he couldn't handle a situation. This is a man that is very intelligent, has two degrees, started two businesses, one still going, although he can't do anything now. This lose of control, just got worse and worse, until he had a stroke and the apathy kicked in.

We all know that PSP is very slow, so if S was showing signs then, I am guessing he had it for a very long time before symptoms started to show. My conclusion, theory, or question, was he born with it??????? If so, then the doctors are looking in totally wrong place, as they are treating it as an old persons disease! Certainly, the trigger that started it, happened very early in life. Not the day before the diagnoses!

I get very frustrated, this is a rare disease, but not one person has come to us, asking questions about S and how PSP has affected him in the past or present! They are treating Alzheimers in the same way. My mother has just been diagnosed, again I know she has being showing signs for some years, my grandmother had it as well, so know what to look for. Surely the research teams should be looking at me, my children or even my granddaughter for some of the answers!!! I know the research teams are hoping that the work in the Alzheimer world will help PSP, but are they looking in the right place?????

(And you thought you were long winded!!!!)

Thanks for listening!

Lots of love

Heady

[wifemo in reply to Heady]

I agree with you, Heady - looking back, the PSP signs were there years ago, and gradually crept up on us.

Didn't know him then, but apparently being in the Blitz in London resulted in alopecia, which won't have helped.

Let's throw this one in as well - at the time he was conceived, his father was handling mercury as an electrician (think "mad hatter's disease") ...

Mo

[Heady in reply to wifemo]

Funny, S's father built engines for Rolls Royce airplanes. So who knows what he was handling! Makes you think, first thought that has made any sense!

Lots of love

Heady

[Sawa]

J is lefthanded and his right side (arm, hand, neck, shoulder and leg) definitely has more issues.

[jimandsharynp]

No stiffness or pain for my wife. Neurologist said right side affected a bit more than left.

[mcfly]

i am right handed --left hand gets fist like stiff- left foot is dystonia tight -left ankle losses strength-left foot has a lack of looseness- left eye droops shut- the only thing I notice about the right side is no arm swing

[Buckeye7 in reply to mcfly]

Mcfly....thank you for taking time to reply......5 to 1 so far. Opposite side of dominate hand affected more. Jan/buckeye 7

[Buckeye7]

Ok...out 7 people who answered 1 : weak side is same as dominate 5 : weak side opposite as dominate 1 : didn't designate dominate hand Now we still need more at least 25 maybe 100? Buckeye 7 / jan

[Tz2388]

Left handed, right side most affected. But after abad fall in the early days, right shoulder is dislocated, right foot definitely twisting and getting weaker.

[kryste]

My aunt Bev is right handed and it is the left one that is balled up , when we go to UCSF to have research done I will mention that, if you dont mind me asking what kind of work did your relitive do I am trying to find out as much as I can as far as similaritys between people to discuss with the team of Docs down there my aunt worked for a dintist Thanks she

[Buckeye7 in reply to kryste]

My mother in law worked as a receptionist all her life. I think that is what you were asking.....if you meant what research my son did.....it was on in the cancer area. I didn't expect that this would be as lopsided. Only 1 has responded on the dominate side. Of course this is still way too few, but ask if they are seeing a pattern develop. Take care buckeye7 / jan

[kryste in reply to Buckeye7]

I will and I promise to report back to everyone day to day what we are doing that day I will take notes so everyone can maybe understand PSP she messed with mercury a lot like it was no big deal, they all did and one day the dintist said to one of her friends I sure hope nothing becomes of it in their latter years I am just trying to take things with me to inform them I will be her study partner and I will be reporting to them I know I am just grabbing at straws but dang it something caused it and what is making it progress , PSP is rare but her nuro. told me she even has a rarer form than most,.

I will keep you posted thanks Buckeye

Kryste

[nannygoon in reply to kryste]

My sister is right handed and her left hand is closed in a fist all the time she gets very agitated if staff or myself try to open it to clean it .Also her rleft arm was stiff and up in the air yesterday when she was in bed resting. Rose was a staff nurse most of her life she is 80 now had PSP for about 4/5 years now can't walk or feed herself and talks very little now.

[Parkybobs]

My husband is right handed but it is his left shoulder,arm etc that is rigid, plus his neck, also he drags his left foot and can not walk at all.

[easterncedar]

Right-handed, right foot dragging, right hand less capable, left eye closing.

[lindsey48]

Hi. MUm is right handed and right side affected. Right hand fist clenched, right leg very difficult to move