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

Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@stephenmcelroy

My biggest concern is how and when to tell my wife and other family and friend about this. I attend a small church and told my church family and asked to be in their prayers. I will be talking to my pastor this week one on one to get a perspective on informing all. Any advice would be greatly appreciated.

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Hello @stephenmcelroy

I am glad to see that you are getting some support from your church on how and when to tell others about your PD diagnosis. For me, it took awhile before I could get my mind around the diagnosis and accept it. So, I waited until I was sure I was comfortable enough with the topic before I shared it with others.

One of the ways I approached it was to begin to say, "I've seen a neurologist recently about some problems I've been having for several years, (at this point you can mention the symptoms if you want to such as tremors, balance problems, etc.) I'm relieved to have a diagnosis now and a treatment plan. I have been diagnosed with PD and have started taking meds for it and I'm beginning to feel better."

This is one approach that I used, however, as @falconfly said, each person is different and has to approach "coming-out" with their own verbiage. It might even be different, depending on who you are talking with. What you say to your wife, might be different than to a friend, etc.

I look forward to hearing from you again. Will you share later how this process goes for you?

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@stephenmcelroy

I plan to join the Tai Chi program at our Senior Center. Currently I do some low impact training for some muscle groups, and some isometrics as well as some stretching particularly for posture improvement that a past PT sessions offered.

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@stephenmcelroy
Tai Chi is a favorite of mine and is highly recommended for PD patients. It is slow moving, gentle exercises that really make a difference.

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@hopeful33250

Hello @stephenmcelroy and welcome to the Parkinson's discussion on Connect. While I'm sorry to hear of your diagnosis, I am happy that you found our online discussion group. My name is Teresa, and I'm the connect mentor for this group. I was diagnosed several years ago with PD but had many of the symptoms for years before the actual diagnosis. I don't have any tremors, my neurologist says that 15% of PD patients do not have tremors, so I'm in a unique group.

I'm glad to hear of your exercise program. Keeping physically active is very, very important.

Has your neurologist recommended any PD physical therapy yet? Have you started on any meds at this time?

Will you post again and let me know how you are doing?

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Haven't talked to a neurologist yet. Had physical therapy for shoulder pain which also addresses posture and am continuing with it at home. I am beginning to develop an at home regimen of exercises that I hope to perform a couple of hours at least 3 times per week and daily if I can discipline my self with an effective schedule. Currently I am working part time performing repair tasks that require moderate degree of different body positions, bending, stretching, and hand dexterity. Noticing an increase in left hand tremors that had been only in right hand. No meds used. This job will become one involving some building rehab and construction functions. Boss and I both have some restrictions but there are younger stronger workers also. Hope to do this as long as I can be productive. I have read parkinson progresses at different rates in different people, making expectations and planning difficult going forward so one day at a time.

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I told my wife. I spoke with my minister prior to doing so. He reassured me that because my attitude was good due to my faith and trust in the Lord, that it would be a stabilizing and calming effect on those close to me as I gave them the information (she does not share my faith, yet, and I do not push her). That seems to have been the case. She was at first anxious but quickly became at ease as I explained the disease and my trust in God for His plan (which He did reveal to me the day after the diagnosis as I asked Him to do).

For anyone this might help, His Word was revealed to me through my daily reader: Proverbs 24 verses 10-12 and the interpretation of those verses as follows: "Trusting in God rather than our own schemes during times of adversity and relying on God when we are hurting often speaks the loudest to those who do not know Jesus. Our greatest platform to influence people for Christ is when we live with the hope of spiritual wisdom. Doing so may very well be the means God uses us to deliver those who are marching toward eternal death. Because we cannot claim ignorance and forfeit our mission to reach the lost, we dare not waste our adversity."

God speaks to us. We only need to ask and to listen. He will present us with His direction for us to follow. It is our free will to choose or not. Attempting to choose what is in front of you in a manner that is consistent with His Word will result in Him guiding your footsteps as you follow the path He presents. When you trust in the Lord, you will see the path He places in front of you to follow. You will "hear" Him speak to you in many ways if you just "listen." I have confident expectations (hope) that this will help someone in their journey with this disease. Praise the Lord.

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I had attempted to reply to you but it appears to have been posted somewhere else. I'll get the hang of this before too long LOL. (This one too?) Oh well.

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@stephenmcelroy

I told my wife. I spoke with my minister prior to doing so. He reassured me that because my attitude was good due to my faith and trust in the Lord, that it would be a stabilizing and calming effect on those close to me as I gave them the information (she does not share my faith, yet, and I do not push her). That seems to have been the case. She was at first anxious but quickly became at ease as I explained the disease and my trust in God for His plan (which He did reveal to me the day after the diagnosis as I asked Him to do).

For anyone this might help, His Word was revealed to me through my daily reader: Proverbs 24 verses 10-12 and the interpretation of those verses as follows: "Trusting in God rather than our own schemes during times of adversity and relying on God when we are hurting often speaks the loudest to those who do not know Jesus. Our greatest platform to influence people for Christ is when we live with the hope of spiritual wisdom. Doing so may very well be the means God uses us to deliver those who are marching toward eternal death. Because we cannot claim ignorance and forfeit our mission to reach the lost, we dare not waste our adversity."

God speaks to us. We only need to ask and to listen. He will present us with His direction for us to follow. It is our free will to choose or not. Attempting to choose what is in front of you in a manner that is consistent with His Word will result in Him guiding your footsteps as you follow the path He presents. When you trust in the Lord, you will see the path He places in front of you to follow. You will "hear" Him speak to you in many ways if you just "listen." I have confident expectations (hope) that this will help someone in their journey with this disease. Praise the Lord.

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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?

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@stephenmcelroy

I had attempted to reply to you but it appears to have been posted somewhere else. I'll get the hang of this before too long LOL. (This one too?) Oh well.

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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.

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@stephenmcelroy

I told my wife. I spoke with my minister prior to doing so. He reassured me that because my attitude was good due to my faith and trust in the Lord, that it would be a stabilizing and calming effect on those close to me as I gave them the information (she does not share my faith, yet, and I do not push her). That seems to have been the case. She was at first anxious but quickly became at ease as I explained the disease and my trust in God for His plan (which He did reveal to me the day after the diagnosis as I asked Him to do).

For anyone this might help, His Word was revealed to me through my daily reader: Proverbs 24 verses 10-12 and the interpretation of those verses as follows: "Trusting in God rather than our own schemes during times of adversity and relying on God when we are hurting often speaks the loudest to those who do not know Jesus. Our greatest platform to influence people for Christ is when we live with the hope of spiritual wisdom. Doing so may very well be the means God uses us to deliver those who are marching toward eternal death. Because we cannot claim ignorance and forfeit our mission to reach the lost, we dare not waste our adversity."

God speaks to us. We only need to ask and to listen. He will present us with His direction for us to follow. It is our free will to choose or not. Attempting to choose what is in front of you in a manner that is consistent with His Word will result in Him guiding your footsteps as you follow the path He presents. When you trust in the Lord, you will see the path He places in front of you to follow. You will "hear" Him speak to you in many ways if you just "listen." I have confident expectations (hope) that this will help someone in their journey with this disease. Praise the Lord.

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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?

Liked by Lisa Lucier

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@lisalucier

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.

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@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.

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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?

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@hopeful33250

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?

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@hopeful33250 thanks for the specialist info

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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

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@homo

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

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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?

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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.

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@ramblyn

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.

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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?

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