Mother very recently diagnosed
 

I posted a similar topic over at the forums at but this community seems much more 'hopping,' so am hoping for some guidance and friendship here as well.

I am a 29 year old female and my mom, who is 50, was diagnosed with Parkinson's last Friday. She started with a slight tremor in her left hand when walking probably a year and a hafl ago. The tremor has progressively gotten worse and is now in that characteristic 'pill-rolling' stage. She also has a tremor in her left thigh. Her handwriting has just recently deteriorated. Her left arm does not swing much when she walks and the doctor also noticed some gait problems. He also noticed rigidity in her left arm.

I am so unbelievably shocked and scared. Of course, I go online and read horror stories of people not living long. But then again, I read wonderful, uplifiting stories of people living with Parkinson's for 30+ years. I am somewhat comforted by those examples.

The neurologist has recommended that my mother see a Parkinson's expert, apparently one of the best in the nation, at UVA. She will hopefully get in to see him or one of his residents soon. She has not been prescribed any medications yet, since we are obviously at the very beginning of this journey.

I'll be accompanying her to the doctors visits as often as I can. I'm terribly scared that her Parkinson's is the type that progresses rapidly, because her symptoms seem to have done so.

I dont' know what I'm looking for other than encouragement and maybe some guidance as to what to ask the doctor and how to start this. I'm so scared that I'll lose her and soon. It worries me to no end.

Thank you... in advance.

Alicia, I'm so sorry this has happend to your family. I am 54 and wonder about what would happen if...You have come to the right place for encouragement and help....
http://i275.photobucket.com/albums/j...sblfndbvbu.gif

Alicia
 

Welcome to the Neurotalk Parkinson's community. Your concern for your mother is understandable and very familiar to those of us here. I am one of three in my family diagnosed with PD; my mother at age 25, my older brother and myself at 63. My mother lived with Parkinson's for 35 more years, at least 20 of which she maintained homemaking and bookkeepinig for a family of six. This was in 1935-60 before the availability of levodopa. From the description of your mother's symptoms, they sound much like my own mothers'.

Both of you have every reason to be optimistic about a good response to the medications now available which are likely to enable her to function at near normal levels for several years yet.

Who knows, maybe the cure that has been promised "in ten years" for the last twenty years will emerge in time for her and some of us too!

Keep positive and encourage your mother to eliminate as much stress from her life as possible, exercise, eat well, and get plenty of sleep. I'm praying that your appointment with an apparently outstanding Parkinson's specialist will be encouraging and helpful to both of you.

Robert

i have had PD for 20+ years.....
 

diagnosed for 18 I am 58 years old. I had a Deep Brain Stimulation in 2002.

YOur mom has plenty of good years ahead of her. The best thing she can do for herself now is to get on an exercise program basically any kind will do. I use a Wii fitness board myself. T here are so many ways PD can affect her. She has around 10 years on medications and then another 10+ with DBS surgery. There are exceptions to every rule and we are all unique in our disease, so it is really impossible to predict anything concerning your mom's future other than the afore mentioned generalities. PD is what you make it, you can roll over and let it win , or you can fight it. I'd advise a support group and get the best MDS you can get. UVA has an excellent program. MY friend Dr. Robert Frysinger does their DBS programming. Your mom is in good hands there!
You did the right thing by coming here, there are many great folks with a wealth of knowledge here. GEt your mom online.

again welcome!
Charlie Black

I was dx'd at age 51
 

Alicia,

My symptoms were much like your mother's - I was dx'd at age 51 -- 6 years ago. You are getting good advice -- to go to a Parkinson's specialist (movement disorder specialist).

Also - a friend & I (both living with PD) have created a website about our stories and life with Parkinson's. Many are humorous - we believe that living well with Parkinson's is up to you. I hope you will visit us at: www.pdplan4life.com

Good luck to you and your mom.

Jean B

Thank you all so much for your replies. It helps I think just to 'talk' and to have people listen. People that know exactly what we're going through.

I know there is hope. And I have wavered over the past few days between really extremes of being hopeful and then being so low I don't know if I could go any lower. I hope that's normal. :) I haven't talked to my mom too much. I'm trying to be strong for her instead of letting her know how terrible I"m feeling, though I know she already knows that.

Chasmo, I actually bought my mom a Wii Fit on Sunday. She had been looking for one for months and I was able to get her one, finally. She was surprised and happy and I'm glad it will help with her symptoms/progression perhaps.

Thanks again. :) I appreciate you all already!

it's hard
 

Alicia -

It took me months to get over the shock and horror of the diagnosis. And my husband was in denial for a year. It takes time, believe me. The people in this forum have been through it.

this is a good place.

welcome

http://www.pdplan4life.com/diagnosis-jb.htm

jean

Thanks Jean! I’m not in denial at all actually, that may be weird? I know my mom’s symptoms are completely consistent with Parkinson’s. I am relieved that it is not ALS as I initially feared, so there is a silver lining. However, my grandfather, my mother’s father, is in denial. I feel awful for him and my grandmother. They are pretty devastated.

Hi Alicia,
Sorry to have to say this but welcome to our little world. I was dx'ed at 40 and I'm 51 now. At first my symptoms came on real fast and even my MDS was thinking it was PD+ or ALS. Well, ten years later and I'm still here a little worse for wear but still mobile when the meds are working. You will see a big difference in your mother when meds are started. She may not be 100% but she should be better. Any questions or concerns check here, these folks are great and know so much about PD.

Hang In There,

GregD

Attitude is important
 

Alicia,

i'm afraid none of us gets the life in the picture we carry around in our heads. We get the life we get. No one knows if we get another one, so we have to live the one that's available.

I'm 63, diagnosed at 53, had symptoms appearing since 43. I'm doing "remarkably well" according to my neurologist in his clinical notes for my last visit, and I had gone for 12 hours without any medications (usually the interval is 4 hours for me at this time) for that visit. I also have osteoarthritis and had a hip replaced two years ago. I had to retire at 56, but I cook dinner almost every day for my husband and myself, I still crochet, make jewelry, and sing soprano in the church choir. Last summer my beloved spouse and I took a 6000-mile car trip (and we're still married!). For my birthday a couple of weeks ago, I taught myself to knit.

When I do struggle with movement, I like to say, That's just how my body works now. When someone commends my courage, i think, What choice do I have? but I say, Everyone's got to have something to overcome, and this is what I got.

it's not the end of the world, nor a punishment for anyone's wrongdoing. It will sneak up on you and surprise you, but don't be afraid of it. When the time comes to bear more, you just may find you're ready to bear more.

There are a lot of resources. I think the NPF website at www.parkinson.org is particularly thorough and well organized. Try the tab "About Parkinson Disease" to get started. Support groups and other activities and benefits can be found through the Parkinson Foundation of the National Capitol Area at www.parkinsonfoundation.org.

Wishing you and your family well,
Jaye