Parkinsons News Today Weekly Forum Digest

Have you tried LSVT BIG therapy?

Feb 10, 2020 01:29 pm | Jean Mellano

Replies: 2

LSVT BIG is a standard, evidence-based protocol provided in individual one-hour therapy sessions and governed by physical and occupational therapists certified in this program.

Here is a link to an article that talks about how LSVT BIG is helping a PD patient:

‘BIG’ treatment helps slow Parkinson’s effects

Have you tried LSVT BIG?  Has it helped you? How long and how often have you been doing it?   If you havent tried it, is there a reason why?  I would love to try it, but there are no therapists certified in this technique near me.

Dysphasia-swallowing disorder

Feb 10, 2020 07:31 am | Shirley Cypher

Replies: 3

My husband has PD with dysphasia.  He has silent aspiration (food, liquid being inhaled with out coughing)  This can cause aspirational pneumonia. He has been in the hospital twice with pneumonia. Pneumonia is a major cause of death of people with PD.  He is working with a speech pathologist to strengthen his throat muscles.  She indicated he should keep his mouth clean through mouthwashes twice a day etc.  One of the things I find no mention of is using xylitol which is a sugar substitute that kills bacteria in the mouth including the ones that cause aspirational pneumonia.  I find a lot of information from dentists about xylitol helping prevent tooth decay but nothing about helping prevent pneumonia.  I have started making a mouthwash of baking soda,xylitol, and water.  At present mouthwash applied with soft foam brush morning and evening,  chew xylitol  gum (several brands available ice cube by hershey seems to have the most xylitol) after lunch and snacks.  you can also make candy with it.  there are recipes on line.

Your Amantadine Experience?

Feb 10, 2020 03:45 am | Cemal

Replies: 17

I am 44 years old. I have been fighting parkinson for 1 year.

I started with azilect for 1.5 months 6 months ago. I have not seen any benefit.

But when I left azilect, my complaints increased and started tremors and shaking on my right feet when I had no tremors.

And now, Bradykinesia in my right arm that impressed me the most. I am young, I have difficulty in doing my job and profession.  I don’t want to start levadopa/carbidopa  for resistance in the future. I avoid and afraid these treatments.

Now my Neurologist recommended amantadine for my symptoms and I’m afraid it would make me worse. Anybody can tell me experience about amantadine using in PD .

The Cost of Chronic Illness for Caregiver

Feb 10, 2020 03:42 am | Mary Beth Skylis

Replies: 9

In a recent column, I talked about the costs associated with Parkinson’s disease. My Dad (diagnosed in 2013) went from working a full-time job to working minimally. He found that the stress associated with his job was having a negative impact on his PD symptoms. And he was ready to take a few steps back.

My Mom, his #1 fan, stepped up to the plate and began working extra to help alleviate the financial costs. They’re both doing well, currently. But I wonder what the cost of an illness is like for caregivers? What ways have you found PD challenging as a loved one? And what can we do to make sure the cost isn’t too much for us?

Was it difficult to find the right diagnosis?

Feb 10, 2020 12:00 am | Mary Beth Skylis

Replies: 0

I often read about symptoms like the loss of smell, muscle rigidity and difficulties with urination. It seems like sometimes the diagnosis process of Parkinson’s is slow. But sometimes  patients experience a mis-diagnosis all together. My Dad’s doctors suspected Parkinson’s as soon as he spoke about his tremor.

But I wonder if it’s always a quick diagnosis? Did you have to go through several doctors to determine what you’re living with? Are you still facing uncertainty?

Do you have any questions about the forums?

Feb 07, 2020 01:57 pm | Ally

Replies: 9

As the year winds down, it’s a good time to reflect on the ways we can better use these forums to serve people with Parkinson’s. Do you have any questions or suggestions for Jean, me and our team to help us improve your experience with these forums?

CBD Oil and Parkinsons

Feb 07, 2020 04:10 am | Mary Beth Skylis

Replies: 4

I’m a Colorado-based athlete, and I recently discovered CBD oil’s recovery benefits. As a rock climber, I occasionally suffer from tendinitis or general muscle soreness. I’ve been taking a CBD tincture for less than a week, and my current symptoms are nearly gone.

While I was speaking to a local sales rep, he mentioned that regular use of a CBD tincture has dramatically impacted people with Parkinson’s. This information led me to wonder: Have any of you tried CBD oil? If so, in what form? And has it made a difference for you?

Myths about life with PD

Feb 07, 2020 04:04 am | Ally

Replies: 2

Everyone’s experience with Parkinson’s disease is different, even if only slightly, from someone else’s, and there are lots of myths and misconceptions about the disease out there.

What myths have you heard? Have you had a chance to educate your family and friends about any misconceptions they might have about the disease or what it is like to live with PD?

Mini exercise bikes for exercise

Feb 07, 2020 04:01 am | Toni Shapiro

Replies: 2

Hi,  I struggle with balance issues and I am looking to find ways to exercise that will work for me. I have had to drop out of classes because I need support.  I am a danger to myself and to anyone next to me, in front of me, or behind me LOL.  I want to continue to exercise but I need to hold on to something.  Aside from the treadmill my physio therapist suggested I get a mini exercise bike.  One that is just peddles that you put on the floor in front of your chair.  Cycle while you watch TV! I think it’s a great idea but thought I would see if anyone has experience with this and ask how it is working for them. Thank you.

Wondering About Azilect?

Feb 07, 2020 03:54 am | Bob Glisson

Replies: 1

I keep reading negative stuff about Azilect.

If you are new to PD and were prescribed Azilect, you may have some questions about it. I know I did.

I was prescribed Azilect about 5-1/2 years ago, when I was first diagnosed. I began treatment, and like most people, I didn’t feel a thing. In my mind, I might as well have been taking a Flintstones vitamin for all the “beneficial effects” I was feeling. Nevertheless, I stuck with it, with the hope that it might be doing something deep inside that I wasn’t aware of.

5-1/2 years later I’m still Stage 1. My right hand tremor (which was my original symptom) is getting worse, but most people don’t notice it. I’m a little stiffer, but not bad. I still party, still dance, still play guitar and sing, still do 95% of the driving when we go out. In fact, until I tell people, they don’t know I even have a disease.

So, is it the Azilect? I have no idea. But I’m certainly not going to quit taking it just because I don’t feel any miraculous effect from it. Yes, it took me a few weeks to adjust to it (as I recall), but it’s a small price to pay for what I THINK I got from it all these years later.

By the way, I get it from Canada for $300 for 90 days. Originally I was paying $300 a MONTH to get it from the USA!!!!! Dang, I’m really surprised I was willing to pay that much, but I’m glad I did. The Canada site I get it from is Discount Med Direct, 941-355-7887, out of Sarasota, Florida. There might be other places too.

If you have anything you want to ask me, go ahead. I have NO “dog in the race”, so to speak, and don’t care if you don’t want to take it. I just think it MIGHT be why my progression has been slow……