Does anyone ever feel all alone in there family or friends in the area of understanding this disease or is it just me.

[salon]

[maryalice]

I don't feel alone, but sometimes I do feel invisible. I think it's really difficult for family and friends to see someone they care about be ill. I don't think anyone can relate to how PD affects someone's life unless they been through it. Someone once said," Parkinson's is not a death sentence, but a life sentence". It slowly steals everything if you let it. The only thing we can do is try to educate them about the disease and keep loving them.

[Bitbit]

Yes, but this web site helps because we are not alone. Here's a hug from me.

[srarndt in reply to Bitbit]

Yeah, what she said! Plus go to support groups!

Steve

Bisbee, AZ

[froggatt55 in reply to srarndt]

Hi Steve - I just had to respond to you since we stayed a couple of nights in Bisbee a couple of years ago when touring Arizona and loved it

My sister lived in Phoenix for 12 years (until December 2012) so I got to know Arizona fairly well with several trips. In fact, it was in the South Mountains just outside Phoenix that I first fell backwards for no reason in October 2002 and in April 2003 after a day spent climbing to the top of Flat Iron in the Superstition Mountains that I discovered I couldn't shuffle a deck of cards - these turned out to be the first indications that I had Parkinson's. I was diagnosed in June 2003 - confirmed by a second opinion and Datscan in September 2003

Although I am a Scot, I now live near Sheffield, UK which is blessed with a tremendous level of Support for Parkinson's (from the Sheffield Institute for Translational Neuroscience (SITraN), the Hallamshire University's Speech Therapy and Physiotherapy programmes, the local Branch of Parkinson's UK which supports a comprehensive programme of exercise, aqua aerobics, posture and stretching, sound therapy and voice classes (we have even started our own choir). The classes all have a social ethos as well as the particular discipline and that social side is key

.In fact I have been told - and agree- that if you have to have Parkinson's, Sheffield is a good place to have it

[Carrigan]

Yes agree we have Parkinson's awareness week starting 13th April lots going on you could get involved it is tiring but fun too and meet lots of lovely people coping with this life sentance . Take care x

[jillannf6]

hi i agreee witha lll the above

it si difficult to let your loved ones see you being ill and gettign worse but this site is good if you want htings explained to you or if you want to vent

lol and abig HUG

JILL

[Hidden]

I do think even your nearest and dearest don't realise how difficult it can get at times.

I rarely if ever comment except on here because I feel comfortable knowing other people with the condition understand somewhat.

I try to live as normal as possible and get on with it all, but even I quite often do not know or understand what is happening, and would find it quite impossible to describe the various oddities which affect daily life.

[hunnypot in reply to Hidden]

I don't feel lonely but there are times I feel like I don't fit in anywhere. I agree with oldtyke. I live with my son and sometimes he doesn't realize how difficult it can be. I am thankful for finding this site. You all have a way of making me feel better.

[shasha]

I SUFER WITH PSP LIKE JILL - BUT I DO NOT FEEL ALONE AT ALL AS I HAVE A MOST WONDERFUL HUSBAND AND DAIUGHTER WHO ARE JUST SOI KIND AND THIUGHTFUL - PLUS THIS SITE IS JUST SO HELPFUL

[froggatt55]

Yes Salon

There are times I feel alone - especially in social situations when my speech is not so good and my Parkinson's face is frozen and I feel totally excluded but I always come bouncing back with my Parkinson's friends and therapists

You must remember you are not alone when you have this great bunch of correspondents to chat to

[mistydog1]

I think "oldtyke" has echo my sentiments exactly. I've only been diagnosed 2 years now .

[PatV]

I agree with oldtyke too. my kids were supportive and helpful when I had an injury (torn meniscus, hernia, etc.) but the progression of PD seems too much for them. They have pulled back a lot, especially younger daughter was told in gruesome detail how advanced and rapidly advancing PD took her dad. And older daughter was put off at a PD event to hear what people were going through. Never mind. I have plenty of fellowship who seem to be encouraged by my stubborn insistence to keep going and doing whatever I can to help out! I am not defeated. Just don't ask me to serve tea

[PatV in reply to PatV]

p.s. 11 yrs with pd, 8 yrs dx, and yes, I do get lonely, but I tell everybody I run into I have PD, and that's why I'm doing whatever it is I'm doing. In NYC nobody worries if you act too weird but I still tell them

[JennyR]

I never feel alone. HOWEVER, following long periods of good or great days when no symptoms are visible to the average person, some of my friends do tend to think I am cured. They do have to be reminded that we celebrate the good days and I prefer to be reading or knitting when things aren't so well. This is of my choosing. I just came off of 6 glorious weeks of not having any drastic symptoms and I felt the world was my oyster. Then, over night, my balance took a vacation, I could not speak clearly, my hands wouldn't work and I cried and cried and then felt somewhat better. Well-meaning friends can really make you feel worse on bad days. Just know we are here to listen and help where possible. God bless. Jenny

[Susie01]

I ordered brochures from NPF since it is Parkinson's Awareness month in the US. I have given them to family members. My daughter read it and a few close friends, my son only took a glance at it...I think it is just too hard for him to accept.

I have had a really bad couple of weeks and yes, well meaning friends were checking in on me, one even offered to sleep on the sofa in my room in case I needed to get up in the middle of the night. I just could not accept that much help though it was very thoughtful. Her father battled PD for many years before his death and she has first hand knowledge of the difficulties.

[alllowercase]

Yes, I get lonely. But that is not necessarily bad for you. I had a wife until recently. All she saw when I was diagnosed was a way to get more welfare money. The fact that, as careers allowance is paid to do some care things for me never crossed her mind until I pointed out that I was doing more heavy housework, not less.

The fact that job seekers allowance is there for people who are actually seeking a job.

She could not get her head round the fact that the benefits are for food and clothes, and not her 8 cans of strong beer every night.

It is now 7 months since she was arrested, and I am sometimes lonely, but I am not alone - my dog seems to teach herself a new care job each week. This week, she comes to tell me when the electric meter is bleeping for money as her new job. I am hearing impaired, so I have a special alarm clock set for 6am. She doesn't like the sound or the vibrating pillow pad, so for months now she has woken me at 5.59 !!!

So do not feel lonely. It is easy enough to find something to keep busy. Try raised garden beds And a stool to sit on. Grow vegetables rather than flowers - feeding the family is much more rewarding than you could ever believe.

And somebody already suggested support groups.

Good luck

Adrian

[salon]

i want to thank everyone who took time to read my question and answer it really picks me up. hugs back to you all

[charlton]

i do feel i am living outside the normal mainstream, difficult to explain but i almost feel detached

[oldskool49]

Alone? Ya. I try to conceal my life's challenge has much as possible. Some people I let into my inner circle but still they do not fully understand what we face on a daily bases. My youngest has said that he is going to be my care giver, but at 21 and a full time college student has his own agenda. Which I encourage him. So in private I hold everything in and continue to try to survive just one more day. And yes I am still employed full time, but how much longer ? I am going to have to have neck surgery soon. The degeneration of the first 2 vertebrae that cause migraines. This surgery I am 100% sure will be what my employer will take and put me into early retirement.

[paddyfields in reply to oldskool49]

There's a US website devoted to "hidden" conditions called "Oh but you don't look ill" or something like that.. Might help. .

[driller]

I am having trouble with my man hhd, I workrd in the oil industry all my workingcareer and today I find my wife has to do almost everything as I am getting weaker and more confused.

So you are not alone

Good Luck

From Florida

ERIC

[whiz]

Some conditions that people face in life show symptoms that are more noticeable by family and friends. And families can see how they might help out.

However with PD being a nerve-electrical impulse condition, I feel that much of what we are going through is just not obvious to others. It is internal, and only experienced by us. At

times it is even difficult for us to explain what is happening. Aside from overt symptoms such as a bad tremor, shuffling of feet, or freezing, folks without this condition have really no way of knowing nor are aware of what you are going through. Some of my friends do not even notice my symptoms. And new folks that I meet do not know that I have a condition. At times when I feel weird all over, my husband has no idea of what is happening. And we have been married for 43 years.

It is a rather weird condition, would you not agree?

However bottom line is- that this condition is ours to face and deal with. Yes, we may seek help and understanding from family and friends at times, but they really do not get it. More importantly is that we need to get on with OUR life.WE are the ones who need to get busy and do something positive to lead us to recovery.

Start reading, ( if you haven't already)and start researching - to find ways of helping YOU. Take a deep breath and begin to be proactive. Find ways and means to make yourself better. Find things that you can do in your own life that will lead you to better health and healing. By reading this online site, you have already taken 1 step ahead. So you see the motivation has begun within you already.

I will give you a couple of sites to look that have really helped me. I hope that they will inspire you to get busy and fight this condition. At least if nothing else, do read some of the blogs. One site to Google is: Robert Rogers "Parkinson's Recovery." The other is Howard Shiftke's Recipe for Recovery.

Good luck to you- and if you dare to try, let me know how you are doing.

Just trying to shed some light.

( Diagnosed June 1998))(age 67)

[Venerocolo]

Ciao have you heard music is good company? Try to listen to Sons of Korah from you tube! And now that you have time say a prayer and you are not alone anymore!

[JAYNIE]

I don't feel alone, even though I live alone, with my dog Izzy. I live in a retirement area, and have a schedule that keeps me going constantly. I have horrible stenosis in the lower back and neck....and just am getting over Plantar's fesitous...(sp???) that is really painful...

my daughter thinks I should be doing more excerise, and I so agree, except it hurts like hell to do anything, close to exercise. I can NOT walk very far, but I do walk quite a bit at the grocery store as I can hold on to the cart. My kids are wonderful, but if I complain at all, my daughter says I don't do anything to help my situation.........and threatens to take away my independence. It is a catch 22........ so I just say I am doing fine...... I am starting exercise class and I orderend the "Howard Shiftke's Recipe for Recovery" I hope I can do some of it atleast......I will try my best. don't know how the all vegetables will do with me, as I have a Koch pouch, my colon removed in 1998......just before I was diagnosed with PD. and some veggies do not digest very well............but again, I will try. I do ride my thrree wheel bike with the battery, which I only use the battery if I cramp up........ but living in arizona, it is so damn hot already...........and either I ride very early or very late in the day......sorry , did not mean to go on and on.................. but our kids think they know and understand, but they do not really know what we are going thru every day and night.

Hugs to all my fellow Parkies........

Jaynie

[salon]

my husband does not understand both my sisters have pd like me one had dbs one has very little in way of symptoms then theres me . i dont want it anymore.i want to quit pd.but i ddont know how.