Edward Fritz
Forum Replies Created
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Hi Dave.
I’m in the process of filing a disability claim with the VA for my Parkinson’s. The USAF base I was assigned to was and still is designated as a Superfund Site, meaning there are serious toxicity issues the government is working to clean up. I’m using a company that is certified by the VA to file and represent me in this process. I served and still live in the Phoenix, AZ area. One of the Community Services reps at the Muhammed Ali Parkinson’s Center referred me to these people who now represent me. The claim was filed in December 2023 and the VA has acknowledged receipt of the paperwork. My rep informed me that it normally takes the VA 6 months on average to review the claim. In case the claim is denied (which they say is not unusual) my representative will file an appeal for further review.
Check with any Parkinson’s organizations in your area to see if they can refer you to someone like this who can evaluate your situation and file a claim for you if you would like them to.
Feel free to follow up with me if you need any help.
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I’m almost 1/2 way through my 3-month trial of Bened’s Neuralli, and to this point I’ve not noticed any improvement in my symptoms. Honestly I didn’t really expect much, since my understanding is that early studies have only shown some improvement in non-motor symptoms, particularly insomnia and constipation. These are symptoms I don’t have (thank goodness) but saw no problem in trying to improve my microbiome. If I continue to not notice any positive changes from the Neuralli over the next month, I will discontinue taking it and focus on other things.
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I had constipation briefly a few months ago. My personal trainer gave me an old home remedy his mom used: WARM apple juice before going to sleep, and upon waking the next morning. That itself seem to help a lot. But I think what’s worked even better was when I went on a popcorn binge. I love kettle corn, and I eat at least one bag per day that I microwave, sometimes two. I use the Orville Redenbacher brand. Between that, and exercising almost every day, my constipation has disappeared! I now have at least one easy bowel movement every day.
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I was a classically trained pianist through my college years, and in my 60’s competed in several amateur piano competitions, having been a finalist in my last one (I’m now 73).The most annoying thing about my Parkinson’s is what the muscle rigidity in my left arm has done to my left hand technique. My suggestions are:
Contact some of the Parkinson’s national organizations and find a “Big and Loud” therapy program in your area (or an online one if there is not one nearby). Parkinson’s affects just about all of the muscles in the body, and as it progresses your body will try to adapt to smaller ranges of motion. This is why you often see things like softer voices, smaller handwriting, etc. Big and Loud classes make you exaggerate your range of motion, including in the throat, which will increase volume of sound, and likely strengthen his breath for playing the flute, and possibly the muscles used in fingering. It will feel odd at first, and maybe difficult, but what feels like an exaggerated movement is actually normal range of motion for people without Parkinson’s.
Also NEVER give up. I still go to my monthly piano club meetings. Some nights I don’t feel like playing, but I tell myself I’m not letting this damned disease take away this pleasure from me. I’ve eased off a little bit on some of the more technically challenging pieces, but there LOTS of other wonderful pieces in the piano repertoire that I love to play. And what I have found is that when I sit down at the keyboard I may have a visible tremor, but the moment I begin to play the tremor goes away and I play beautifully. Plus I still get to enjoy the company of the group and the music of the others – maybe even more so than I did before.
Don’t give up – adapt as necessary. I don’t climb trees anymore, not because of my Parkinson’s but because of my age. But I still enjoy the outdoors. In fact I appreciate it more than ever! -
First of all, I agree with Alan M.
I was a practicing dentist for 41 years. In my last year or two, I started having strange symptoms that I didn’t correlate with Parkinson’s. I was ready to retire, and the timing was very opportune – I sold my practice about a year before the pandemic. After more tests and questions to my physicians, I was finally given the Parkinson’s diagnosis. While I was not pleased to hear this, it was in some way a relief to finally have an answer that explained all the symptoms I was experiencing.
So in a sense Parkinson’s was a retirement “gift,” but not the cause of my retirement. However that was 2-1/2 years ago, and I would have been forced to retire by now with my current symptoms. -
Just to make sure everyone understands, these studies were done on the HEREDITARY form of Parkinson’s, caused by mutations of the LRRK2 gene, which is not a particularly common form of the disease. The previously cited materials on high-dose vitamin B-1 therapy I believe are more applicable to Parkinson’s disease in general. I also believe that at this moment high-dose B-1 (Thiamine) therapy has better research to back it up.
I’ve been doing the high-dose B-1 therapy for about a month and some of my symptoms seem to have improved, especially my non-motor symptoms. However the researchers on high-dose B-1 therapy are quick to emphasize that its primary benefit appears to be stopping further progression of the disease, NOT curing it. That in itself is well worth following the protocol. Also, B vitamins don’t seem to have any negative effects at high dosage, and the daily cost of sublingual B-1 is only about FIVE CENTS. I’d say that’s worth a try! -
My personal trainer’s mother is an elderly Southern woman with a lot of home remedies. Her advice: drink WARM apple juice before bedtime and in the morning after waking. To my delight it actually works!
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I am an accomplished amateur classical pianist, and when I retired 3 years ago I was looking forward to spending a lot more time with this hobby. Without question the single most annoying part of Parkinson’s for me has been the effect it has had on my pianistic abilities. There are days where I get so frustrated that I have to just take a break.
One way I deal with this is to focus more on what I still can do. I select less technically difficult pieces that are just as rewarding to play. I focus on lesser-known composers and repertoire. Doing this has helped me to stay active with a piano group I have belonged to for years, and they now look forward each month to hearing what recent discoveries I have found. The result is that I enjoy performing now as much as I ever have, and anticipate being able to do so for as long as possible! -
I’m 6 months now into my Parkinson’s journey, and much to my surprise my mood has been exceptionally good during this time. I’m an introvert by nature, so maybe that helps. However that being said, introverts tend to withdraw into themselves even more than normal when they feel stressed. One way to deal with this is to participate in less threatening activities, such as online support groups (this group being one example) that require less personal interaction.
I do find it helpful to enroll in activities that I enjoy or that sound interesting. I do Rock Steady Boxing 3 days per week, work via zoom with a personal trainer 5 days per week, have zoom classes 2 times per week at the Juilliard School (I’m an accomplished amateur pianist – at least I was until Parkinson’s came along), and just started a calligraphy class that meets once a week. Check with your local community center and Parkinson’s organizations to see what’s available, and look online for classes that sound interesting. Some of the best Universities in the country offer free online courses.
We’re all going to experience “down” days when we feel like not socializing. Look for those things that make you feel better on those days. Susan mentioned hiking in the woods. Being out in nature can have a great calming effect. For me playing music I love can transport me to a wonderful place where Parkinson’s doesn’t exist!
Finally recognize that you’re not alone in this battle, and others you may meet who have PD can be understanding and comforting at these times. And thank you for starting this topic. Just asking this question reassures others that they’re not alone.
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Play a “brain game” called LinkSame on my iPad every day. Also try to spend a significant amount of time playing piano every day – don’t know of any better way to rewire the brain then playing music. Especially piano with every finger, eyes, ears, memory, etc. all being challenged.
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Just diagnosed Sept 2022, but have had these lovely symptoms occur rather impolitely over the past few years; (What a rude progression this disease has!)
resting tremors left hand
urinary incontinence
constipation
poor balance- not falling yet
slow movements
difficulty initiating movements after sitting
softer voice/slower speech
smaller handwriting
anxiety
Insomnia
fatigue
excessive sweating
visual processing and depth perception-especially at night
muscle rigidity – left side
left hand doesn’t swing while walking; hold left hand like a claw
dry eyes & mouth
apathy
brain fog
No meds at this time; hoping to participate in trials of new therapies, most of which want newly diagnosed and no PD meds currently;
since current modalities do not cure, slow down, or stop progression of PD, I’m willing to try new options.
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Yes I will. At 72 y.o. I caught a new variant of Covid that the vaccines and boosters were not specifically designed for, and it kicked my butt! Without the immunizations/boosters I likely would have been hospitalized. The vaccines are changed to adapt to new variants as they occur – which viruses often do. I try to stay healthy, but I’ll take all the help I can get as age and PD make me more susceptible to serious illnesses.
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I bought a Red Rush360 unit recommended by Ari Whitten in his book “The Ultimate Guide to Red Light Therapy.” It has both red light and near-infrared lights at the wavelengths that seem to produce the best results. It has become one of the therapies I try to use regularly, as I do feel noticeably better when I do.
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I agree with NanaLisa as well.
Rock Steady Boxing is one of the most fun exercise programs I’ve ever been involved in! Everyone from newly-diagnosed to advanced stage PD can participate, and the workouts can be very intense for those who still have minimal symptoms. The instructors are great and very creative. Never thought I’d be going regularly for boxing training at 73 years of age!
I’m less than 2 year’s diagnosed, so I can still move pretty well and hit the bags really hard. I haven’t felt this well in years, and give a lot of credit for this to RSB. That being said, I think the camaraderie and friendships I’ve made through RSB are even more responsible for keeping me healthy both physically and mentally than anything else I do.
In my opinion, all PWP should go to a RSB program several days per week. I can’t imagine having the same quality of life without it!
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The reason is there are no double-blind research studies with B-1. The researchers in Italy who were working on B-1 studies have had trouble getting financing for such a “gold standard” study. Not surprising as there is no money to be made from sales of B-1 vitamins, which cost the patient less than $1.00 per day, so don’t expect a pharmaceutical company to show interest. Their best hope for funding is one of the Parkinson’s organizations, or individual contributions. Hopefully they will be able to do this study as it shows promise for reducing symptoms and possibly stopping disease progression.
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About 3 years ago (and 3 years before diagnosis) a long term patient and friend I hadn’t seen for a couple of years came into my dental office for routine care and asked me, “Why are you walking like that? Are you ok?”
I wasn’t sure what she meant, but looking back she had noticed me shuffling, unliked I had walked before. Shortly after I began to notice a slight occasional tremor in my left hand, but at the time I did not associate either condition with Parkinson’s.