Stories

Alicia Douglas Headshot   Revised

The Incurable Optimist

Diagnosed at 40

The crazy thing about my symptoms is that they all started around my 40th birthday...like a stiff neck and yoga wouldn't loosen me up. I went to my chiropractor he said I was in alignment.  I would be running and my left foot would like skid like there was gum stuck to it.  My energy after I would workout was like I got hit by a bus...crazy stuff that I just chalked up to turning 40!

So this Feb. my husband and I were in Iowa to support our daughter at swimming Big 10's and I went to use my Blackberry to get directions to the restaurant and my left hand started shaking uncontrollably my speech was slurring.  My husband thought I might have had a stroke so when we got back to Michigan, my husband took me to ER where they ordered all kinds of tests that all showed to be normal (ct, mri, blood work etc.). The ER referred me to a neurologist and this is where I was told I was normal by this doctor of Neurology who left me a message on my cell phone!

The next day I made an appointment with my primary Dr. and he looked at me and said, "You do not look normal something is going on and I can’t put my finger on it!"  My Dr. refereed me to a neurologist who he went to undergrad with at Michigan State but different medical schools. I met with Dr. Silverman and in the examination I found out that my left arm didn't move when I walked and he asked me, "This other Neurologist said you were normal?" I said, "Yes that what he said, would you like to listen to the message?"  He just shook his head. At this time Dr. Silverman said he would like to order a Dat Scan that will show levels of Dopamine. I said to him, "Well I know I’m not schizophrenic or have Alzheimer’s, are you checking me for Parkinson’s?" He said “don’t worry”, to just have the test done and he would see me next week.

A week later I’m sitting in his office and I was like tell me I’m crazy tell me the test came back normal? He got really serious and he said no it came back abnormal! I was like WOW crazy stuff that I just thought I had because I turned 40... Listen to your body! Dr. Silverman prescribed me a medicine for Parkinson’s called Sinemet he said it will help with the symptoms of Parkinson disease. When life throws you are curve ball you just have to hit it out of the park!

I am currently 43 years old with four incredible daughters 18, 16, 14 and 7. My husband Jim and I have been married for 21 years and to say the least the diagnosed came to us as a shock! My mom said if someone must get this disease "Alicia is your gal" she will find the tallest building and shout out the importance of awareness, research, and raising funds to support the cause! I believe one person has the power to make a difference in the world and that exactly what I intend to do!


Alicia has created her own Optimism page to help raise funds for PD research and support services. Please support Alicia's efforts by visiting her Optimism page today.

11 Comments

Alicia is courageous & inspiring and my prayers go out to her! Assuming that things happen for a reason, I would say that her mother said it best! She's your gal! I believe she has the power to make a difference for sure!

Jim McBroom, Apr 26, 2012

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Alicia I am inspired by your story. I am so with you that everything happens for a reason and if we can get the word out and raise awareness the world will be for those of us living with Parkinsons at a young age. I believe we are lucky that it was caught when I was diagnosed it was hard to find a hospital with the dat scan since it only came out on the market last April. I hope your fundraising goes well. Good luck with your journey stay strong and always believe that you can over come this especially with your families help.

Samantha, May 3, 2012

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Alicia,
First off let me say you have a great name.It is the same as my sis in law's middle name! It is wonderful of you to make some things happen, in regards to awareness and fundraising.I myself was DX at age 38 and in the beginning before ant tests, Drs. or whatnot, I came up with this thought"There really is nothing wrong with me, my walk, lack of swinging arms- nearly 40 and getting, u know old."

In my life I just take one day at a time, try not to stress and like Alicia take something negative and find the positive.I use to run a Young Onset grp. in Omaha then recently gave that role to someone else.I needed more time with my family: son 15 and daughter 12.Also, most importantly tke key to feeling good is exercise, being flexible.I love Yoga it helps my balance alot..enjoy the poses we learn and practice every Friday.I look forward to those days at a hospital based wellness center.Also like taking chair pilates class. Fellow PDr's have a positive outlook on life, it helps!

Kate, Jul 31, 2012

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Hi, I have not been "diagnosed" with PD as of yet but, this past Mother's Day I started having trouble with my memory; forgetting things that I had done, even forgetting my last name. Then, over the next few days I developed a speech difficulty called Apraxia (I had a very hard time getting even two words to come out of my mouth), I became very weak in my left side and had numbness as well, my left foot dropped, exteme fatigue, I started having a few tremors, "electric shock" and tingling in the back of my neck and into my head, vision problems, and many other issues. Since then I have had an MRI, CT, Spinal Tap, EEG test, and a ton of blood work. I was told so many different things...maybe it was a stroke, maybe ALS, most likely it is MS, and when none of those were proven with the diagnostics testing I was told that I probably have "Conversion Disorder" which is a "stress related neurological malfunction" and that I needed to take an antidressant medicine and maybe see a psychiatrist! (This did not make any since to me because I had not had any traumatic event happen that could have thrown my mind into overload) He then went on to tell me, "There is NOTHING neurologically wrong with you, everything came back completely normal, it must be something mental going on. I think you are stressed even though you don't think that you are."...I really thought that I was going crazy. I just wanted to cry my eyes out! BUT, trusting them and believing that the doctors surely must know what they are doing, I accepted it and went about my life, all the while suffering so much. I started taking therapy 3x a week (which I MYSELF had to request since none of the doctors were even offering to give me any help) and taking an antidrepression drug as well as a pain medication for the deep muscle pain and tremors (at times the tremors are so deep that only I can feel them) None of these were helping. Even therapy was so difficult for me because my left side is so weak and my foot drags the ground. I was given a platform walker with an arm brace attached to help stablize my gait, an AFO (foot brace to lift my left foot of the ground), and a wheelchair because I was too weak to walk very far at all.
About 2 or 3 weeks ago the tremors started getting so bad that I couldn't sleep at night, my arms jerked so bad that my husband would reach over and hold them down for me so that I could rest. I began to have muscle tightness and stiffness in my left leg, arm and even my neck and I also noticed that my skin is getting really oily. I talked to my physical therapist about my tremors and she told me to ask the doctor about a medication that they give to people with parkinson's disease so that is what I did. Just this past Friday I saw my Primary Care Doctor and told him, "We HAVE to do something! This is really weighing me down." I can't walk without assistance, I can't drive because I can't think properly, I have trouble walking without getting so weak that I feel like I could collapse and now my tremors are so bad that I cannot sleep and at times I have to wear wrist weights to hold my arms steady enough to eat or drink. He put me on a medication and said this, "I am not saying that you have Parkinson's Disease but I just want to try this medication to see if it helps." He gave me Carbidopa/Levodopa (or Sinemet 10/100) 3x a day and told me to try it. I started taking the medication this past Saturday and I am absolutely amazed. My tremors are almost completely gone for at least 6 hours at a time (I take the med. every 8 hours, my left leg doesn't "ache" like it has been and it even feels stronger (my foot is still dragging and I still have to wear the brace to prevent me tripping over it), and overall I just feel quite a bit better than I did before taking it. Even my physical therapist was so excited yesterday when I went to therapy. I am not supposed to see my doctor again for a month or so but I am really looking forward to telling him this. However, I do have a question that has been running though my mind the past couple of days....If this medication is helping me already and I have only been taking it for 3 days, does this likely mean that what I have IS Young Parkinson's Disease? I know that you all (on this site) may not be doctors but I have seen soooo many doctors (PCP, rheumatologists, neurologists, hemotologists) and none of them have given me "hope" of finding out what is actually going on with my body. SO, I welcome any comments from those who may have gone through some of the same things that I have.

Misty Bryant, Sep 11, 2012

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I was told that if Sinemet helps, then PD is your diagnosis.

Mitzi Kimbrough, Oct 25, 2012

If I didn't know better I would say that someone read my diary and has posted it on the site! What you are describing is my exact experience down to the conversion disorder diagnosis! I am still shaken by reading your account.

Thank goodness I saw another neurologist specializing in movement disorders and in less than 10 minutes - I kid you not- he diagnosed PD. Good old Sinemet had me going in 3 days!! After I had been bed-ridden for 2 years!

I am still shocked that I have been able to resume my work, enjoy social activities besides the TV, etc.

I would suspect that it is PD based on your experiences and mine! Remember with PD you can still LIVE, LOVE and LAUGH! Joy

Joy C, Feb 1, 2014

I was diagnosed at 37 and had had the under lying issues for what we think after looking back was five years. They worked with me for over a year and a half to fugure out what could be wrong. I am fortunate enough to be near washington universityin St.louis Mo. We have an incredible movement disorder clinic. I was referred there after a small stint of hspitalization for seizures and then possible a stroke two weeks later. itif course was neither. it was a strong surge in the parkinsons. I was able to get amantidine 3x's daily a medication that is typically for siezures. It made an incredible difference for a period of time. After two years I had to increase the dosage to now include the carbidoba/levadopa.With the two combined I am able to teach all day in my class as well as carry out most of my daily activities until about 8:30 without any pain and some shaking.I have children so sometimes I increase the time between medication and then it last longer into the night. I also swim three days a week for at least a mile at a time. T(three years ago it was 10 laps:)his has helped the most I believe. I have also been able to build a small group of other parkinsons patients that swim with me and we talk about whats going on with us. I hope you find comfort in your journey!Good Luck

RENEE Hall-Re, Sep 24, 2012

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Alicia,
We "all" have something in common.We didn't choose PD- but it's how we choose to challenge ourselves. I just submitted my story to this site; however, I've been fundraising (just under $200K..to date) and an active advocate (visit PAN.org) since my diagnosis n 2006 @ 39. I had DBS in 08. Not 4 everyone- but it gave me a new lease on MY life. Click on this link!
https://www.youtube.com/watch?v=G-KY55hDYxI
What a blast Alicia.
STAY INVOLVED! Keep smiling- especially when you don't feel like it.

David Dorsey, Feb 12, 2013

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Thank you for sharing your story. I haven't been diagnosed with PD, but I was told that I have some of the symptoms (tremor, arm doesn't swing when I walk). I had a lumbar fusion in November and I haven't been right since. Shortly after my 40th birthday in April, I was in the ER with what seemed like a stroke. All tests came back normal. I have been experiencing tremors, stiffness and my left arm doesn't swing when I walk. My Neurologist told me that I have symptoms of Parkinson's, but he wants to observe me for 3 months. He said he would need more symptoms to verify a diagnosis. This is the frustrating part that I face. The wait and see...

Kim, Jun 18, 2013

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I am NIH Registered Clinical researcher conducting a research on Parkinson's currently, In Ann Arbor MI, Noticed you are in Michigan hence though It might benefit you. my professional website is www.naturalmedtherapy.com and from there you can see the listing of the study with Dept. of Health/NIH as well. Keep yourself going! Sincerely,

Therapist Al R. Zia, Feb 14, 2014

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Thank you for sharing your story. I am curious as to how they explain the stroke like symptoms you experienced (slurred speech) or the shaking you experienced in your hand that came on suddenly. I have experienced both those symptoms and Parkinson's ones. My arm does not swing, I have the same foot lag, etc. but the stroke like symptoms (which happen from time to time) have them stumped.
Thank you

Naomi , Feb 16, 2014

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