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

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?

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.

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?

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.

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.

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.

@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.

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?

Each person is different, but my advice is the sooner the better and be prepared for people to give you suggestions and tips and stories about others with Parkinson's. They want to help...at least that is my opinion. Don't take offense. My son who is in his 60's has it, but he doesn't seem to want to get involved with a group and seems to want to do it all himself. I think that is a mistake, but I have to respect his wishes. Perhaps I would feel the same way....My best to you.

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.