Parkinsonism

Hello Teresa, thank you for your response I appreciate you. I first noticed a small tremor on my finger but thought nothing of it because I work using a computer on a daily basis and thought that was the cause. One day I went with my staff to eat lunch and I was trying to eat some soup and my hand started shaking uncontrollably. This is what prompted me to see the doctor. My father had Parkinson’s and I recognized that tremor. I noticed some changes in my voice but again thought nothing of it and thought it might be related to acid reflux. My doctor referred me to a neurologist who asked me a couple of questions, had me do some things with my hands and feet and had me walk and turn. She said she didn’t like what she saw and she sent me for an DAT SPECT scan. This is when she diagnosed me with Parkinson’s. Waiting several months to get the scan and then having to wait another month to see the doctor for the results was mentally draining. I wish we didn’t have to wait so long for this process.

I started researching on the internet and reading some books I purchased which have helped me tremendously with symptoms that I am experiencing. The symptoms I am feeling hit me like a ton a bricks all at the same time. I started with the tremor, the voice issue, and then I had problems with gait. I was walking to one side and I started moving slower. I started feeling pain in my legs which turned out to be rigidity of my leg muscles and I have started feeling it in my neck and shoulders. I have started having lingering headaches and problem with my eyes. At times I feel confused and I am having some memory issues. Sometimes I have a difficult time getting words out when talking with someone.

I have a strong feeling that I may have something more than Parkinson’s. From my reading I am leaning towards LBD or PSP but I am not a doctor. But I do know my body and what I am feeling. I am hoping they can give me some answers. I am scheduled for an MRI but again I have to wait a month for the appointment. I learned that there is no one test that will definitively tell me if it is any of those but I have to keep trying. I am physically, mentally, and emotionally exhausted! I have a wonderful wife who is very strong, but I know it is also affecting her. I never want to be a burden to her so I must keep moving forward. I have noticed a decline in my health but I am not giving up.

On a good note I have lost 35 lbs and I have regulated my A1C so my doctor took me off of the metformin. Kind of bitter sweet huh. I have other symptoms and I can go on and on. I will stop there for now. I am looking for help but I have learned that with these types of diseases there is still much to be discovered and limited neurologists that specialize in this field where I live.

Thanks again and I will leave it there for another day. 😊

Hello @louiem777,

As it has been a while since you last posted about your neurological symptoms, I wanted to check in with you to see how you are doing. As I recall, you were going to have an MRI. Did you have that done?

I would be interested in hearing from you again with an update. Will you post and let me know how you are doing?

Hello @hopeful33250
Thank you for reaching out. It has been a little stressful and busy for me. There have been a lot of changes. I did have the MRI and it was all clear. Nothing was found which is good news. Since then I have changed to a different Neurologist which has been better for me. It has been slow going but I know it is a process. I am still learning and doing my research. The doctor gave me a supplemental medication that has helped extend the time my Carbidopa-Levodopa works for me. I also learned that I needed to take the meds on an empty stomach in order for the Levodopa to be absorbed into the body appropriately. That is something I did not know. Foods high in protein compete with the Levodopa and does not allow the Levodopa work as intended. Once I started taking the new medication and started taking them on an empty stomach, I started feeling better. I still have some internal tremors but the pain I was feeling in my legs is so much less now. I am having problems with my right arm and I am having trouble lifting it up to the side. It is very painful and I am starting to feel the same pain on my left arm. I recently started having a more noticeable tremor on a couple of my left fingers. I am having trouble with sleeping. I have several days of waking up between 1 and 2am and I can't fall back to sleep. These are days that are a little more difficult. I usually pray and push myself to keep moving forward. I can't let this disease beat me spiritually. It might attack my mind and body but I need to keep my spirit positive.
A couple more things, one positive and one negative. On the positive, I have lost about 40 lbs and the Doctor took me off of my metformin for my diabetes. My A1C has gotten better and my sugar levels have been normal. On the negative side, I went to see my Cardiologist and he has diagnosed me with Hypertensive Heart Disease with Congestive Heart Failure. Now I have two more medications that I have to take. I have been having to go and do more tests and many more doctor visits. It is getting tiring going to so many doctors. There are more days that I am physically and mentally exhausted. My emotions are all over the place but I have found a great support system in my beautiful wife, family, and some of my work family. I keep everyone updated on my conditions and how I am feeling emotionally as well. I don't hold back because they are always keeping me positive. This has been a fight of my life! It's a lot to put out there Teresa, I hope it wasn't too much.

How are you doing?

So good to hear from you, @louiem777, it does sound like you are making progress with your neurological issues but having some other issues that are keeping you busy. Taking the PD medications at the right time can certainly make a difference in their effectiveness.

It is good to hear that your heart disease with Congestive Heart Failure were diagnosed and are now being treated. Are you feeling better with the medications for these issues?

How wonderful that you have such a great support system. It certainly helps us get through the tough times.

I would be interested in knowing the medication that you are taking that makes the Sinemet last longer. Is it Entacapone? I've been taking that for several years and it does make a difference.

Look forward to hearing from you again.

I was diagnosed with Cerebellar Ataxia five years ago. I have an ataxic gait, significant balancing issues, cognition issues, nystagmus, double vision, speech issues, swallowing issues, mild tremors. All typical aspects of Cerebellar Ataxia. A couple years back my neurologist referred me to Mayo for MSA testing after I ‘failed’ the DAT scan on levels of natural levodopa. I passed all the tests so I do not have MSA. However, since my DAT scan results I have been labeled with Parkinsonism…not particularly Parkinson’s. Any thoughts on what Parkinson disorder I might have?

My mom has Parkinsonism. She is 69 very healthy, no way to treat or stop progression, losing her ability to speak or articulate her words. I know she's suffering being pretty sound minded and still running circles around me. Seems to get worse w stress and later in day tired.

I appreciate you sharing about your mom's Parkinsonism, @kell4042. If you would like to share more, I'd be interested in knowing how long ago she was diagnosed and what her first symptoms were. Has she had any speech therapy for the articulation problem?

My mom has Parkinsonism. She is 69 very healthy, no way to treat or stop progression, losing her ability to speak or articulate her words. I know she's suffering being pretty sound minded and still running circles around me. Seems to get worse w stress and later in day tired.