It seems someone is always trying to sell you something online and the Big Brother of the Internet has your demographics down to a science. I am one of those people who never gives truthful personal information online in an effort to not let Big Brother know me too well. I told Facebook that I am a 114 year old man and yet, I get bombarded with ads for hot flash treatments and hormone supplements. How do THEY know? You only need to put one word in a google search and you will get ads for days and days related to that one topic. These days, numerous ads for products, supplements, treatments and devices related to Parkinson’s shower my social media. I know this is because of my daily searches for something, anything, new that might help me and others with Parkinson’s. As much as I try not to pay attention to these ads, I’m as human and as desperate as the next person and it is hard not to hope something will work. Once in a while, I will try out something if it is recommended by someone I know or I see that multiple people have recommended it. I do this with a healthy dose of skepticism and an awareness of the company’s return policy.The first thing I bought online after reading a review from a fellow Parkinson’s blogger was a weighted blanket. (Big shout out to Twitchy Woman for the recommendation). I have personal experience seeing the benefit of these with Autistic children. I LOVE my weighted blanket. I don’t claim to know why it works, whether it just be the added physical weight on me or if that sensation actually does something to the nervous system but I know I feel better when I use it and my tremors are reduced. On the downside, it is heavy. If you have trouble turning in bed or getting out of bed, it might not be the thing for you. It is also hot. I have tucked it away for the summer and I miss it but the heat is just too much for me. I have actually considered using the blanket on the side of my body affected by PD and hanging the other half out from under the covers, balancing out the hot and cold, but the gymnastics involved in keeping this balance and wanting to roll over in bed at 3 a.m. made me rethink this.
I heard there is a “cooling” weighted blanket but am waiting for more information before I jump on that one. It doesn’t seem possible that something so heavy could be cooling but I have been wrong before. More recently, I tried a vibrating metronome worn on the wrist called the Soundbrenner Pulse that I saw some Rock Steady coaches discussing. The device was designed for musicians, not people with neurological issues. This one peaked my interest because I have seen people move better when they have a rhythm to move to. I often play music with a good beat when I need to cook dinner. Having a rhythm makes my movements smoother. My hope was that the vibrations would lessen my tremor. Although it seemed like my tremor was less sometimes when using it, it didn’t help at other times. After many trials, my results were inconsistent.
I did like wearing it when out for a walk but as of right now, I don’t really need it for walking so I returned it. I think there is a definite potential with this to help someone with gait issues and I know of a music therapist that uses vibrating metronomes for gait training, speech and singing. If you try this, I highly recommend training with a music therapist or physical therapist to figure out how this might help you.
My latest purchase was Touch Points which are vibrating devices that are supposed to stimulate the Vagus nerve and calm the nervous system. You can wear them on the wrists or other places on the body. Unlike the Soundbrenner Pulse, you have to wear two of them. I was more than a bit skeptical but the company offers a thirty day return policy so I figured why not? My first few times trying them were disappointing. I really thought I would be returning them. Not wanting to give up on them too soon, I kept using them everyday for about 20 minutes at a time. I used them later in the afternoon when my meds don’t work as well and my anxiety peaks. After a while, I forgot I had them on and would realize later that my anxiety was less and my tremors were reduced. I haven’t worn them in public yet and even at home, my husband sometimes thinks my phone is buzzing when it is my Touch Points. The scientist in me can’t dismiss the fact that there may be some placebo effect in there but even if there is, they make me feel better and help me until my next dose of meds kick in. I’m not at the thirty day mark yet but am likely to keep these.
I am not a doctor, just a person living with Parkinson’s, that disease of the incredibly complex and sometimes completely mysterious brain. I believe there is knowledge to be gained in exploring alternative options and I think that we should share that knowledge. I am not recommending trying things with the potential to harm you or trying things that you can’t return if they don’t work for you. I am recommending that if you try something, share the info on how it works with others. We are all in this together and we are better when we fight together.