When family and friends want to deny you have PD

\hi susie01

i have PSP a rare type of Parkinsons and since i ahve been diagnosed in dec 2010 haec been v open about it 4 anyone who want s to knwoo

but as you say i look ok although have lost a lot of weight around my face (!)

and there r no meds for it and it will be fatal perhaps in 2/3 years

People STILL say "they may ifnd a cure and u look good "etc "and thatnone o fus knows hwat is aroudn the corne"r (could be knocked down by a bus etc etc)

i do know my prognsis is poorbut I just ignore it and keep smiling

what else can 1 do??

love jill

Jill,

I am so sorry for your condition. When we talk about awareness of PD, I don't know of any public awareness for PSP. Sometimes life can be so tough, you are in my thoughts, Susie

hi susoe

yeah but i am good as i know what my health problems r now since diagnosis

love jill

Isn't PSP a type of palsy that comes on fast? I have a good friend that explained it is very disabling in a short amount of time.

My 84 year old mother runs circles around me. She doesn't understand why I'm moving around well one minute and the next I can hardly walk....or just fall over. My sister-in-law was having her own pity party for me...how do you deal with that! Visitors come to the house and go to the kitchen table while I'm in the living room. I can't sit very long in those hard chairs and they know that.....and there are only 3 chairs. It's like I'm being cast as a plant that isn't worthy of being watered.

I need to get a life.

Merle

i have found that since being diagnosed with pd that some friends have backed off & people say you look so well to borrow aline from someone elses poem" iwish they could be me for just one day" i find having a sense of humour helps alot my heart goes out to anyone who is afflicted more than me especialy the ones with yopd so live for today remember the old motto" nil carborundum illigitum " never let the bxxxxxd grind you down "it doesnt always work but it makes you smile

Yes! My dad especially. He's came around but still thinks he can cure me with supplements etc. just know you're not alone.

Hugs,

Michele

Thank-you Michele,

It seems that it is easier for them to think I have low blood sugars, or even for a couple of "friends" to think I am drunk when I stagger or my words will not come out correctly. That is hard I have chosen not to continue the "friendships" with those who want to call it an alcohol problem. I had a question sometime back that had many comments of people thinking they are drunk. I live in the Bible belt, I have never denied having a glass of wine now and then but I would hardly call it alcoholism...,

Hi. Like some, I have lost a lot of weight (65 lbs. Ineeded to, but there had to be other ways) and my friends think I look great. They have read and know about PD, but walking a day in my shoes would definately be an eye opener. Especially a bad day. I just keep smiling and try to keep up...for now.

I imagine if anyone were to "walk a day in any of our shoes" they would throw them back at us long before the end of the day! Today is not a good day for me. I've been up since 4:30 a.m my toes hurt, my neck hurts, and my shoulders hurt. I hope the day gets better. :o)

I am with you, I have had several bad days, it was after several good days. When I do have good days, I tend to overdo things, it is hard because I was always a "whirlwind" of activity with a strong work ethic. It is hard when there is no energy to do anything. Thanks for your comment, it helps to be in a community of people who are experiencing similar things.

I was told I had PD 6 yrs ago.

Last Sunday, in church, I sat behind a man who couldn't sit still.

I felt terrible because it took me awhile to realize he could have PD. You would think that would be my first thought.

The first response from a friend was "You don't have Parkinsons. My sisters try to tell me what I should be doing/ They think exercise will cure it. Ask questions as to how I feel, and want to tell me what I can do to feel better. Lots of my friends just accept it which is much easier. I sort of don't know what to say when they ask how I am. What do you say? I may say, pretty well for a man my age. And everyone tells me how well I look, as if that will make it all better,

I guess that reflects non-belief.

I have a very close friend of around 23 yrs., her Dad had PD. I called her when I had figured out that I had PD. She drove me to the Neuro's office and filled out all of my paperwork because I what shaking so badly to do it myself. She has been extreemly supportive and I am thankful for her.

Believe it or not my shrink told me "You don't have Parkinson's, you have anxiety". I thanked him for curing me and never returned.

Too funny! I started seeing a counselor during my divorce. I told him and my internist that I felt like I was shaking inside. Both of them thought it was anxiety, my counselor sent info into SS Dept., retrospectively he has said he felt it was early signs of PD, my internist has not voiced and opinion. Though after I was diagnosed by the neuro, he checked the neuro markers and said that I did have PD!

Funny how everyone says the same thing to me, "Are you sure it's PD?" Maybe you should get another opinion.. I have gotten three because I wanted to be sure myself.. still not enough for some. Denial is tougher to deal with others than myself.

After several months on meds after diagnosis, I felt I could start back to work. I was hired on the spot, I was very open in regards to the PD and just how debilitated I had become before diagnosis and treatment. I explained there are good days and bad days. The person interviewing me said she could not imagine that judging by the way I looked and felt that day.

The first few weeks, I did well but crashed on the weekends. Then it was not enough recovery time and I missed days and found myself very symptomatic. Long story short, I was put on leave, asked to have my neuro evaluate my job description and whether or not he felt I could do the job. His anwer was NO, he had already told me I could not work, but I guess I was just too driven...

On good days, it is easy to see that we look and feel ok, with the exception of dropping almost everything I pick up! Only those closest to us see the bad days...How we fall and cannot get up, how the words will not come out, the terrible tremors that prevent us from doing anything! For me, the first person to see this was my daughter. She then had a whole new concept of how this disease can affect you. She made the statement that she now understood what I was dealing with after taking forever to get me in a standing position after a fall, then having to hold a cup with a straw to give me water and medication because my tremors were so bad...

My daughter is a nurse and said, when I told her my diagnosis, that my doctor "must be on crack." She refused to believe it, but is gradually starting to believe as my symptoms become more bothersome. She will hold my arm when we walk together, like she is the mother and I am the child. Not sure I like that. Also, I told a neighbor I had PD, and now she avoids me completely.

Recently, I got down on the floor to play with my granddaughter and couldn't get back up. The child is four, tiny. She came around and tried to lift me!

Finally I see a group of people that I can understand and relate to. I can't do the superwoman routine and I appreciate these honest comments, I start to feel like I am the odd one out sometimes

I was diagnosed last April and just turned 37 on Jan 1. I've only told my Dad, Husband, parent in-laws and 2 friends. I'm not ready to tell yet. During my families Christmas gathering, my father noticed that my left hand was trembling and asked, loudly in front of everyone, "Jamie why is your hand shaking?" I glanced back at him and made eye contact for him to shut it up. He then asked again, louder, and at this point the whole room was looking. I was mortified. It was one of the first instances that someone other than me or my husband noticed my symptoms. Of course it ruined my week and my symptoms got worse just from the stress of it all.

We spoke later and he told me he was sorry, he forgot. Wth?! I told him it was ok, but it's really not. I'm having a hard time letting this go. He once asked me after a dr appointment if the dr still thinks it may be Parkinson's. From these 2 incidents, I feel like he doubts my diagnosis too. It's so hurtful. I can understand why you would be hurt as well.

PD is a difficult disease to understand unless you are going through it. My husband is my strongest supporter and is a wonderful person, but even he still asks (for the millionth time) "what does it feel like" or "can you do this". Little things like that are so frustrating because the brain controls every aspect of our body. Even the bad. It's just hard to explain.