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?

@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Hi Teresa- Not sure of the question- But I live close to that area. JJAMES

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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@johnjames Was this regarding finding a support group in the Phoenix area? Teresa

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@david59

Just wanted to say “Hi”. this month marks 20 yrs since my first symptom of PD… February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression…freezing (if the doorbell or phone rings, I’m stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my “window of opportunity” as I call it. Well, that’s all for now. 🙂

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Teresa- thank you for always helping me in many ways- and for your willingness to do so. what can I do to help your research???

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Hi
I am in the Uk and am caring for my 87 year old mother in Law.
It wits end with symptoms, ie she has bad balance problems, hardly walks but if she does she needs a frame, slur in here speech, blood pressure all over the place from 102/75 to 222/95.
Shuffles when walking and massive fatigues.
Also feeling of head full a lot of times!
Suffers from small vessel disease in brain and doctors say pots!
Do you think there is any Parkinsonism in her?
Here is hoping for some guidance .
Steve. England. Uk.

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@charlton, Hello and welcome to Mayo Clinic Connect. This community forum is one where we share medical experiences and give support for people with similar diagnoses. We do not give medical advice nor are we physicians. We do have resources that we can pull from the Mayo Clinic Web page if someone is searching something specific.

I have found a link on POTS information listed on the Mayo web http://mayocl.in/2rpMJGM
In addition, here is a link with information on Parkinson’s disease- http://mayocl.in/1sW44lG.

Also, if you are interested, here is a link to our caregivers group- http://mayocl.in/2h1ttpY. This would be a good place for you to connect with others who are caring for a loved one.

Steve, how long have you been caring for your Mother-in-law?

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@jamienolson

@charlton, Hello and welcome to Mayo Clinic Connect. This community forum is one where we share medical experiences and give support for people with similar diagnoses. We do not give medical advice nor are we physicians. We do have resources that we can pull from the Mayo Clinic Web page if someone is searching something specific.

I have found a link on POTS information listed on the Mayo web http://mayocl.in/2rpMJGM
In addition, here is a link with information on Parkinson’s disease- http://mayocl.in/1sW44lG.

Also, if you are interested, here is a link to our caregivers group- http://mayocl.in/2h1ttpY. This would be a good place for you to connect with others who are caring for a loved one.

Steve, how long have you been caring for your Mother-in-law?

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Hi
Thanks for reply.
Been looking after after her for around 3 months now.
She thinks this all started a few years ago when she kept bumping into things?
She would not be able to walk her dogs in a straight line as though people might think she was a bit drunk were her words.
She has had episodes where her motor skills are not good when washing teeth, pouring tea, and going to the Loo.
Also has very bad constipation but still takes herself and is not incontinent.
Has a comode by her bed where she sleeps downstairs..
Impossible to navigate stairs!
Has been told 2 years ago that there was some activity showing on brain MRi but hospital never followed this up. H
One example of how bad this is is when she was at the solicitors for some legal matters she sat there talking with solicitor for an hour and had a complete memory loss like the hour never happened untill she was asked by solicitor if she was ok? So he got an ambulance and they took her to to the hospital.
She had tests and they think she had like a Tia.
I could go on and on re postural drop but i need some feed back as she has been to a very well known neuro hospital for tests and i realy do think that you get to a certain age and you are told to get on and re train your brain.
What can i do?
Fortunately she lives next door to us but i can see soon someone is going to have to stay with her 24 hours?
In a nutshell i think we could be talking of two or three problems here?
Good to know there are other people who might know some of the torment she is going through.
To everyone out there with these sort of symptoms keep fighting and try to stay mobile if you can and exersize your brain!
All the best
Steve

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@jamienolson

@charlton, Hello and welcome to Mayo Clinic Connect. This community forum is one where we share medical experiences and give support for people with similar diagnoses. We do not give medical advice nor are we physicians. We do have resources that we can pull from the Mayo Clinic Web page if someone is searching something specific.

I have found a link on POTS information listed on the Mayo web http://mayocl.in/2rpMJGM
In addition, here is a link with information on Parkinson’s disease- http://mayocl.in/1sW44lG.

Also, if you are interested, here is a link to our caregivers group- http://mayocl.in/2h1ttpY. This would be a good place for you to connect with others who are caring for a loved one.

Steve, how long have you been caring for your Mother-in-law?

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@charlton11 Hello Steve and let me also welcome you to Mayo Connect. I’m so sorry to hear of your mother-in-law’s problems. When I was in my late 40’s I began with some similar symptoms. Specifically, the staggering walk (especially when I was fatigued I would walk to the right side), major fatigue (especially after physical exercise like taking a walk, etc.), when I was fatigued I would have more of a problem with small motor coordination (had a difficult time picking up small objects, putting on jewelry, etc.). I also had foot dropping (or as I called it foot dragging). and very definite balance problems. Here in the U.S. when they suspect Parkinson’s Disease (PD), they rule out other disorders with an MRI of the brain, EMG, nerve conduction tests, etc. and then if that is all normal they start you on a Sinemet (brand name for Carbidopa/Levadopa) which is the gold-standard for PD symptoms. If the medicine helps they make the diagnosis of PD. In my case, the med did help the symptoms, so it was decided that I did have PD. I did not have all of the symptoms that your mother-in-law has but the symptoms that I mentioned were predominant. Please look at the websites that Jamie mentioned, you might also be interested in the Michael J. Fox website https://www.michaeljfox.org/ You might especially be interested in the link, “Understanding Parkinson’s” I agree with Jamie that you would be helped by our caregiver’s group, Scott is the mentor of the group, his contact info at Mayo Connect is @IndianaScott. Thanks for your post and we welcome you to join in with any discussions that you find helpful. Continue to share with us as you are comfortable. We are here to support and encourage you. Teresa

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@jamienolson

@charlton, Hello and welcome to Mayo Clinic Connect. This community forum is one where we share medical experiences and give support for people with similar diagnoses. We do not give medical advice nor are we physicians. We do have resources that we can pull from the Mayo Clinic Web page if someone is searching something specific.

I have found a link on POTS information listed on the Mayo web http://mayocl.in/2rpMJGM
In addition, here is a link with information on Parkinson’s disease- http://mayocl.in/1sW44lG.

Also, if you are interested, here is a link to our caregivers group- http://mayocl.in/2h1ttpY. This would be a good place for you to connect with others who are caring for a loved one.

Steve, how long have you been caring for your Mother-in-law?

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Hello @charlton11 It is nice to e-meet you here. I am Scott and I am sorry to hear of your mother-in-law’s medical concerns. As @hopeful33250 Teresa said I mentor on the Caregiving discussion group. I was my wife’s primary caregiver for 14 years and we are a great spot for caregivers to share ideas, needs, frustrations, tricks folks have learned along their caregiver journeys, and to simply break the isolation often accompanying caregiving.

My family roots run deep in the soils of Cornwall so personally good to hear from someone from the UK!

Sending you peace and strength!

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@jamienolson

@charlton, Hello and welcome to Mayo Clinic Connect. This community forum is one where we share medical experiences and give support for people with similar diagnoses. We do not give medical advice nor are we physicians. We do have resources that we can pull from the Mayo Clinic Web page if someone is searching something specific.

I have found a link on POTS information listed on the Mayo web http://mayocl.in/2rpMJGM
In addition, here is a link with information on Parkinson’s disease- http://mayocl.in/1sW44lG.

Also, if you are interested, here is a link to our caregivers group- http://mayocl.in/2h1ttpY. This would be a good place for you to connect with others who are caring for a loved one.

Steve, how long have you been caring for your Mother-in-law?

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@IndianaScott How interesting, Scott. I did not know about your Cornwall roots! Teresa

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I haven’t been on in awhile but I made a little discovery that I wanted to share. the last time I posted I said that I had recently developed mobility issues. I shuffle, freeze up and have trouble going through doorways. usually at home I don’t wear shoes…and at home is where I have most of my issues with freezing and shuffling. at work I seem to do better. I have finally made the connection between wearing good fitting, lace up shoes at work and no shoes at home. so I started wearing shoes around my house and the difference is substantial. I wonder what the mechanism could be? I still have issues with doorways and would appreciate any ‘tricks’ for helping on that. But I am greatly encouraged with the relief that wearing shoes around the house has brought me. cheers!

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@david59 Cheers it is! I’m pleased that you found a way to circumvent your mobility issues with good fitting shoes, that is great. With regards to “freezing” I have attended a lot of PD seminars and I heard a suggestion that if you find yourself “freezing” at a doorway or when you are next in line at a store, take a step backwards and then you will more easily go forward. I’d like to ask our other PD members about their experiences with freezing, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. Have any of you found any help with the freezing phenomenon? Teresa

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@hopeful33250

@david59 Cheers it is! I’m pleased that you found a way to circumvent your mobility issues with good fitting shoes, that is great. With regards to “freezing” I have attended a lot of PD seminars and I heard a suggestion that if you find yourself “freezing” at a doorway or when you are next in line at a store, take a step backwards and then you will more easily go forward. I’d like to ask our other PD members about their experiences with freezing, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem. Have any of you found any help with the freezing phenomenon? Teresa

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I just want to know the differences of parkinson disease and ms
I’ve been diagnosed by two neurologist that l might have ms or parkinson disease. I don’t know if their are smilarities or if its a diagnoses you can’t completely diagnose. But l truly believe l don’t have either one. So l just want to know if anyone can explain the differences and how it’s diagnosed. Thank you

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@colleenyoung

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I’d like to invite you to the new group on Connect dedicated to discussions about Parkinson’s disease. It’s a space where we can ask questions, share tips and learn about living with Parkinson’s from each other. Whether you live with Parkinson’s or care for someone with Parkinson’s, please join us. Pull up a chair and tell us a bit about yourself.

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My husband has Parkinsons and I’m his primary caregiver. He is intellectually intact, but his speech is usually so soft that many people can’t hear him. Although I cut his food into small pieces, he is a sloppy eater and not a pleasant dinner companion as he was pre-Parkinsons, also he has excessive saliva which makes our social life rather lonely. I’m looking for a remedy for this apart from Botox injections which he has a few times. It isn’t long lasting and it is expensive in terms of travel and fees.

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@colleenyoung

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I’d like to invite you to the new group on Connect dedicated to discussions about Parkinson’s disease. It’s a space where we can ask questions, share tips and learn about living with Parkinson’s from each other. Whether you live with Parkinson’s or care for someone with Parkinson’s, please join us. Pull up a chair and tell us a bit about yourself.

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@sandycerem I can understand the predicament you and your husband find yourself in. Soft speech, excess saliva are all part of the picture of PD. There are “drying medicines” that can be used, however, meds that dry your mouth also dry up the rest of the body including the digestive tract – which often makes constipation more of a problem. I have found that chewing gum is a way to combat drooling – chewing gum causes you to swallow that excess saliva to keep from drooling. Regarding the soft speech, speech therapy helps with that – as does singing. Has your husband’s doctor given him a referral to a speech therapist? There are Parkinson’s singing groups. I’m not sure what area you live in, however, you could “google” singing groups for Parkinson’s and see what you come up. Have you discussed these problems with his doctor? Teresa

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@colleenyoung

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I’d like to invite you to the new group on Connect dedicated to discussions about Parkinson’s disease. It’s a space where we can ask questions, share tips and learn about living with Parkinson’s from each other. Whether you live with Parkinson’s or care for someone with Parkinson’s, please join us. Pull up a chair and tell us a bit about yourself.

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THANK YOU very much for your quick and helpful response.  My husband has had speech therapy off and on since his Dx. several years ago.   Perhaps we should try it again.  
What is strange to me is that his mood and behavior change from day to day…  One day he's engaged verbally with normal speech volume and clarity, and the next day his speech is almost inaudible and he ignores my attempts to converse with him.. Depression could be a possibility given the limitations he experiences now as compared to when he was fully engaged  professionally.  His intellect and memory show no deterioration and thankfully he is able to use a treadmill and stationary bike like a normal, robust man.Interesting, eh?.

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