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

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!

@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

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

@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?

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.

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???

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

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

Hi, @johnjames. I hope your spirits have lifted over the past month and that I can make a small contribution to keeping them up. You mentioned Agent Orange as a factor in your medical history. My high school buddy, Michael Kjome, came home from Vietnam in 1973, infected by Agent Orange. As you might guess, it got to him and took his life 13 years later, but not before he found a wife and a new life in Norway, fathered two children, and died there in 1986. That you have come 31 years farther beyond his worthy life makes the case, hopefully, that your fate is unaffected by Agent Orange. I earnestly hope so. If you're interested in the story of his troubled time in Vietnam, check it out at https://www.pownetwork.org/bios/k/k601.htm. And tell me whether I might do more to smooth your road forward.

@david59 Thanks for letting us know how you are doing. Exercise is great. Many of the YMCA's in my area have a Peddling for Parkinson Program but I know of a lot of PD folks who have an exercise bike and pedal on their own. I'm glad that you found what works for you. Hopefully, the meds will get adjusted for you. Teresa