Living with Parkinson's Disease - Meet others & come say hi

Hi, @stephenmcelroy - glad to hear you were able to have a conversation with your wife about your diagnosis and that she became at ease as you talked more about it.

Sounds like you are getting things all organized for your regular PT regimen. Are you seeing progress or positive effects with doing the exercises? You also mentioned no meds. Are you planning to start medication in the future, or what are you and your doctor planning for treatment going into the future for your Parkinson's?

@ramblyn - how are things going with your husband with his teeth chattering and the other facial movements you'd noted? Have you and your husband gotten to talk to the doctor about these symptoms?

No worries, @stephenmcelroy. This page may be helpful as you get to know the Connect site https://connect.mayoclinic.org/get-started-on-connect/.

If you click on reply below anyone's response to you and also use the @____ (the member's username), it will help to be sure that the person you are addressing sees that you are talking with them. I also suggest clicking on VIEW & REPLY in any email notification, so you go on the site and see the whole context of a discussion.

Hello @stephenmcelroy

I am glad to hear that the conversation with your wife went relatively well. The fact that you were at peace with your diagnosis was a helpful, I'm sure. Making known your diagnosis is a good first step.

Have you been referred to a neurologist, yet? If not, I would like to suggest that you seek a Movement Disorder Specialist. These specialists are neurologists who are especially trained in movement disorders (of which PD is one of those disorders). A general neurologist is not always as good in treating PD as is a movement disorder specialist. Here are a list of movement disorder specialists at the Mayo clinics, https://www.mayoclinic.org/diseases-conditions/movement-disorders/doctors-departments/ddc-20363911?Page=2#44525362caf74b6080dda86e07205b76. You can probably find such a specialist near to you as well.

Will you keep in touch?

@lisalucier Have not had further discussions with primary care who diagnosed 3 weeks ago, nor set up appointment with neurologist. Have been researching as much as possible to understand as much as possible. So far hand tremors are the only apparently involvement. Right hand first noticed about 4 years ago, as I recall (maybe more). Left hand noticed about 1-2 months ago. Am getting ready to follow up with a doctor. Possibly at Mayo Clinic.

I live in WV. Unfortunately in WV my experience with doctors is, some are good to excellent others not so. My wife had a questionable experience with one neurologist here and I have with another, especially regarding what they think they hear and understand about what you are telling them, as well as a cursory explanation of their solution and why. I have developed a somewhat cynical philosophy of "there is a reason they are practicing in WV as opposed to Manhattan or Beverly Hills." Because of this I like to research extensively to be able to ask intelligent questions and understand when I am getting intelligent answers (or not). I agree with what someone said (on this site I believe) that it's a great idea to be your own best patient advocate.

I understand that the disease progresses differently for different people. I am thankful for the experiences being related by patients and their spouse/care givers as to their experiences with timeline progression they experienced. Gives me a frame of reference to start from and what to look for and ways to deal with it. Thus being able to research those aspects far in advance as opposed to a more panicked rush if something is sprung upon me. DBS, for instance.

Still looking for more info as to what I might possibly expect going forward. My limited understanding at this point is tremors, freezing, memory problems, depression, effects on care givers... all of which I will be looking to expand my knowledge base on both what they are, how they progress, and available solutions/assistance available... as well as additional aspects of parkinson.

Hello @stephenmcelroy

As you are researching you might take a look at the Michael J. Fox website. There is a wealth of information there. Also, the National Parkinson's Foundation website is very good.

Here are the links, https://www.michaeljfox.org/understanding-parkinsons/ and https://www.parkinson.org/ways-to-give?utm_campaign=rkd-paid&gclid=EAIaIQobChMI_vnm4d3D4AIVCFYMCh2glg-jEAAYASAAEgI4tPD_BwE. I would also encourage you to find a PD support group in your area. It can be very comforting to learn how others are dealing with this disorder.

I am glad to hear that you are considering going to a Mayo facility. Will you keep in touch?

@hopeful33250 thanks for the specialist info

My dad is suffering from Parkinson's disease. His symptoms have worsened in the past year. He suffers diarrhea immediately after eating, and continues to loose weight. He had a recent ct scan that showed rectal thickness. My mother was going to inquire if it was more than 3 mm or irregular. His Parkinson's symptoms have worsened. His gait, walking and speach. He's been on dopamine for some time and I don't know if this problem started before or after the medication was introduced. I don't think he is physically able to do the prep needed for a colonoscopy. He has spine disease and suffers great pain daily. Cortisone shots (5) recently hurt him badly and gave him no relief. He is unable to take narcotics. They confuse him even more and has had a very bad reaction from them. He actually went into the hospital about 5-6years ago to detox from them. I'm afraid my dad is going to die from malnutrition!!! Is it a complication from Parkinson's disease or is it something else. The ct was preformed to rule out cancer. Our only answer was rectal thickening. I will question my mother to see if the diarrhea started with the introduction of the meds. And ask her if the thickness was more than 3mm or irregular. Thank you for your reply

Hello, @homo - your concern for your dad is admirable. That is very hard that his Parkinson's symptoms such as gait, walking and speech have worsened this past year, and that he also has diarrhea immediately after eating, continues to lose weight and has rectal thickness.

I'm inviting some of the members in this discussion to which I've moved your post, "Living with Parkinson's - Meet Others and Come Say HI," to interact with you and provide some insights as you seek to support your dad. I know you have met @hopeful33250, and I'd also like you to meet @stephenmcelroy @ramblyn @falconfly @dfelix @beverlyann @susan62 and others here in this thread.

Has your dad or mom gotten to ask the doctor about whether these gastrointestinal symptoms are related to the medication he is taking, have any relation at all to Parkinson's or are due to something else? If so, what did the doctor say?

In terms of Parkinson's and speech, I have read and also watch my husband's speech become much softer. After hearing a specialist talk on how Parkinson's can affect the vocal cords, I had my husband sign up for speech therapy. This disease can also affect the ability to swallow as it progresses.
In speech therapy he practices speaking louder, and doing various vocal strengthing exercises. In our area we are fortunate to have a twice a week exercise group for those diagnosed with Parkinson's.

I am also a big proponent of speech therapy, @ramblyn. As you indicated it is helpful for both speech and swallowing. I am glad to hear that you are also involved in exercise groups for PD.

What type of exercise is done?