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.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Elaine, If you research HIFU or simply "focused ultrasound" at all you will probably be contacted by Insightec, the company that makes the equipment and markets it quite aggressively. HIFU and DBS are fundamentally different in that HIFU is non invasive (does require shaving your head) but actually ablates (kills) brain cells thought to be responsible for the symptoms. While side effects so far have been rare, they are not reversible if say, your speech in unintentionally impaired. Also they have only in the past week or so received FDA clearance to treat both sides of the brain, and there is a one year wait in between, before that second head shave. I think the technology has promise, but hasn't nearly the experience of DBS which has been done for decades. I am quite fascinated by the "Parkinson's glove" I read about in another forum which is now in clinical trials. Completely non-invasive and at least in some cases, amazingly effective so far. Good Luck.

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@edroz01

Thank you Patricia. I am going to check out the Neupro patch and discuss this with my PD doctor. I have also been investigating HIFU to treat tremors. Don't know if you are familiar with this non-invasive treatment. Very interesting, but not something I am considering at this point. So glad you are having success with the patch. I appreciate your insights.

Take care, Elaine

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What is HIFU?

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@tedalmon

Elaine, If you research HIFU or simply "focused ultrasound" at all you will probably be contacted by Insightec, the company that makes the equipment and markets it quite aggressively. HIFU and DBS are fundamentally different in that HIFU is non invasive (does require shaving your head) but actually ablates (kills) brain cells thought to be responsible for the symptoms. While side effects so far have been rare, they are not reversible if say, your speech in unintentionally impaired. Also they have only in the past week or so received FDA clearance to treat both sides of the brain, and there is a one year wait in between, before that second head shave. I think the technology has promise, but hasn't nearly the experience of DBS which has been done for decades. I am quite fascinated by the "Parkinson's glove" I read about in another forum which is now in clinical trials. Completely non-invasive and at least in some cases, amazingly effective so far. Good Luck.

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Ted, yes I have spoken to Insightec and have researched DBS and spoken to 2 gentlemen in my Rock Steady Boxing group who have undergone DBS. Both have so far had great success. It is not something I am at all considering. I did find a center where they have done several of the HIFU treatments. I agree that the HIFU has promise, but until there is sufficient evidence that doing both sides of the brain is doable without serious side effects I am electing to try other treatments. I am excited about the Parkinson's glove and hope it is as effective as they claim. Thanks for your reply and insights. Elaine

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In reply to @bruceandruth1970 "What is HIFU?" + (show)
@bruceandruth1970

What is HIFU?

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Bruceandruth1970, HIFU is high intensity ultra sound. I think if you google it you will find a good explanation – better than I can give you! Let me know what you think.
Elaine

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Thank you. That sounds very interesting.

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Hi,
My name is Michael and just joined this group. I was diagnosed with Parkinson's in August 2018.

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I read with interest about a Medicare paid program for Parkinson's called BIG Program. Can anyone share more ? I would like to look into it. Thanks

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@hopeful33250

Hello @cindylb

I can’t say that I’ve ever heard of that particular symptom before, but Parkinson’s affects everyone differently. Perhaps someone else in our group will be able to relate to it.

You mentioned that his doctors are not sure about his diagnosis. Have they ever tried him on a low dose of Sinemet (Sinemet is the gold standard for treating Parkinson’s)? Often times if a patient responds to the treatment that helps to confirm a diagnosis.

Teresa

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I agree that a trial with Sinemet is a good idea but success or failure will not confirm anything. I was born with genetic dystonia and Carbidopa-Levodopa (Sinemet) works like a miracle for me. Yet it does not work for all types of dystonia. So Sinemet works for some movement disorders and not for others. Therefore, this will be a process of elimination and confirmation. If the Sinemet works or helps that does not confirm or deny Parkinson's; however, you will have something that helps. A trial period of using the drug supervised by a neurologist will provide a data point. The drug has been around a long time and is very safe. I have been taking it for YEARS otherwise I wouldn't have had any life at all. Remission of symptoms coupled with a neurological exam is the only way to diagnose neurological, movement disorders or neurological/muscular problems. Then narrowing it down is required. I know because I have lived successfully with dystonia for 74 years and it took a while to finally organize the treatment plan that worked best for me. I know others with dystonia and nothing works for them. My dystonia gradually progressed from tripping, falling and clumsiness and then to the inability to write script and color within the lines as a kid to trapezius twisting, head twisting, tremors and difficulty breathing and speaking simultaneously or the way most people take speaking and the ability to talk and walk for granted. I am not describing being winded but rather gulping between sentences. The carbidopa-levodopa enables me to function without any symptoms at all and I do not have Parkinson's. Good luck to you.

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@AgentDarien

is it possible for me to be member having dystonia not PD. Many PD people suffer from both, but I only have Dystonia.

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I just wrote a long reply and it got posted on the Parkinson's group when I clicked for the dystonia group. I do not have Parkinson's. I have dystonia.

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I have been diagnosed with vascular parkinson's. What is my prognosis?
Mel

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