My Dad was diagnosed with PD about 2 years ago. Initially he did not have a definitive dx because they said he did not have the traditional PD gait. Now he has tremors in his hands and one leg, slower responses, flat affect and his balance is quickly declining and becoming the biggest concern with a dizzy spell while standing yesterday that looked almost like a seizure. Is this common?
He’s on many meds for other issues totaling 16 pills daily which I think is part of his difficulties. It’s heartbreaking watching this strong man who took care of our family turn into a feeble shell of himself so fast.
I know that mindset is so important and his is not good. He’s very headstrong and won’t use a cane. He keeps saying he doesn’t need it yet. He stopped BIG therapy, is falling into an depression and I feel like he just resolved himself to this is how it’s going to be.
I know he has a right to live his life the way he chooses, but this is so hard to watch. I don’t know if I have a specific question but any suggestions or thoughts are greatly appreciated.
Wishing you all the best of days ahead in your PD journey.
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parkinsonsrecovery.com This is a website I have been using lately for encouraging alternative therapies. You can also sign up for a daily email for tips and how to cope naturally.
Mindset is a huge part of this. If I think negatively my body reacts and I seem to decline, if I think positively my body reacts and I feel better.
Exercise is huge in fighting PD.
B1 therapy is very promising. "Parkinsons and the b1-therapy book" by Daphne Bryan on Amazon would be helpful.
I recently read the book "The Wim Hof Method ". It's a practice of breathing and slowly introducing cold showers.. Since doing this I feel better, more positive and I'm seeing an improvement in my symptoms.
Good positive music helps me too.
It takes a while to adjust to the diagnosis. I hope and pray your Dad finds a way to cope and bring balance back into his life 🙏 It is possible.
Thank you so much for the resources and your words of encouragement! I really appreciate it and will look into them. I'm glad you are navigating your diagnosis so well. Best wishes for continued good health.
Thank you so much! He has seen 2 neurologists and a functional neurologist. All concur it is PD. What is first Neuro? I will take his list to the pharmacist as well. The therapy seemed to be helping, I started giving him NAC and purchased the Gladiator belt even though it is in the early research stages. I am looking for any holistic support so this is great! Thanks again.
Hi, I had been going downhill with balance and came across omnipemf.com/.
Up until then I was starting to sit on the bed to put my undies and shorts on. I also timed standing on each foot, 30 secs for standing on left foot and over a minute for standing on right foot. I placed my omnipemf headband at the back of my skull just above the vertebrae with the arms going upwards behind my ears. Low and behold my balance on my left foot immediately improved above a minute.
Everyone is different but this new device is very interesting and worth a try. They also have a Facebook page so check them out.
Your dad sounds very like my own. For a long time he was very reluctant to do/try anything proactive, and seemed to believe that once he had a diagnosis the doctors would give him medication to manage his symptoms and that would be that. When it became evident that that wasn’t the case, he became very depressed.
It has helped him enormously finding exercise classes aimed at people with Parkinson’s. He now goes to two a week, one organised by the local branch of the Parkinson’s Society, and another that is run by a group of physiotherapists, aimed specifically at people with balance issues. He also has an exercise bike that he rides daily at home.
As you say, mindset is key. With dad, stress and anxiety cause a dramatic escalation in his symptoms, so I have been encouraging him to try deep breathing exercises and explore other ways of lifting his mood.
It is incredibly hard seeing him so frail, but I do see signs now that he is finding ways to be more positive, and I am very proud of him for that. It just took a long time for him to adjust.
Thank you so much for the encouragement. He is struggling to adjust to this diagnosis and help and I can’t imagine how difficult it must be. Yup. My dad just wants pills and he thinks they’ll be a magic cure. He was stubborn before the diagnosis, now even more so. Thanks again and best wishes to your family as you navigate this.
Interesting points you make. I think he’s on way too many meds. The DAT scan was fine at first and then amended. They first were just calling it Parkinson-like symptoms and a form of Parkinsonism. It’s good to hear therapy helped. He won’t do anything to help himself though and stopped BIG therapy. He definitely is feeling limited and not in control, a very unfamiliar and uncomfortable place for him to be. I’ll definitely try the music and Dr. Joe Dispenza is great to listen to as well for holistic wellness. Thank you for sharing your personal perspective. Good luck to you.
16 pills a day? I had parkinson's for 7 years now but haven't that much meds, yes I have balance issues, my regular meds are CL and safinamide equfina brand that's all I take and B1 thiamine caps from which I learn from followers of Dr constani's protocol from fellow PD patients
To clarify, he has other health issues too that he takes meds for... Thyroid, high blood pressure and cholesterol, and then supplements and vitamins. Everyone is mentioning B1. I’ll add researching Dr. Constani’s protocol to my lost. Thank you!
hi i have had PD 16 years now so followed lots of peoples journeys. A few comments that arise from reading this post.
Thyroid is often needing to be ruled out when pwp are first investigated, could he have beem misdiagnosed and be on treatment he doesnt need?
High blood pressure, has his MD adjusted these meds since he was diagnosed with PD. Does he have ortho static hypotension (very likely) where his BP drops when he stands.
Cholesterol meds can cause muscle pain which can be confusing for pwp
Depression is very likely as your father is low oh his feel good hormone - dopamine.
His was dx 2 years ago. Thyroid is managed. Just taken off of Lipitor which seems to have helped some as far as the balance and tremors go. The apathy is definitely difficult for him right now
Check his medications. Our neuro put my husband on Klonopin (Clonazapam) for anxiety almost a year ago. He didn't have any anxiety, but they thought it would help his stiffness. It didn't. Klonopin is a highly addictive drug, and just being on it for a few weeks is considered long term use. It is so addictive that to make sure we didn't abuse it, we couldn't refill it until we were almost down to the last pill, then they'd approve our refill. He started out being approved for 1 pill (1/2 pill, 2x daily for a total of .5 mg, supposedly, a light dose). Later he was told he could up it to two pills a day "as needed". I thought just the 1 pill was too much and told them he was over-medicated, but they never really addressed my concerns. Unbeknownst to me, I later discovered he started doing 2 pills a day for about a month. During that time, I noticed he was just shuffling more and more incoherent, his balance was worse. He just seemed intoxicated. He had stopped driving at least 6 months ago. Once I realized he increased his meds, i became frustrated and decided to take matters into my own hands and made the decision to get him off that medication. I started to wean him off myself, reducing it by 1/2 a pill about every 3 weeks. He is now down to 1/2 pill after almost 2 months. By the end of May, I plan to have him off completely. He is doing much better, no longer walking around like a zombie, his ability to have a coherent conversation is back, and yesterday was the first day he had driven our car in months. All this to say, check certain medications that might have been added recently. My husband didn't need this anti anxiety drug, but they prescribed it anyway. I don't recommend people just detox themselves without checking with your doctor, but I researched to death how to get off of it and it needed to be done slowly over months. Our neuro said if I was going to reduce it, leave him on half a pill, but I want him off completely, because he was dependent on it. I watched him like a hawk during the weaning off process and with some discomfort, he made it this far, so I don't want him going back. My next goal is to reduce him to a 1/4 pill for a few weeks, then stop altogether. He told me he no longer feels like his head is foggy and he is more himself now (though the ability to speak during off times remains an issue.) We really have to be our own advocate when we feel something is wrong. Just something to consider.
Thank you for sharing your experience. My dad turned into a zombie over a period of 2 months. The shuffling and balance is the most concerning because of the fall risk so I’m frantically trying to figure out holistic practices. His neuro is useless but my dad won’t go to a third opinion. His first dr was so much better but stopped taking Medicare. You are so right! You have to go with your gut and advocate. Thanks and best wishes to you and your husband.
just my two cents but a rapid decline can be indicative of an infection such as an inner ear infection or a uti. Make sure to rule that out if you haven’t already. Best of luck!
Aww, we all have our own lens through which we look, Champman. I can't imagine the daily struggles you encounter and how PD makes independence difficult. Support groups have helped me, but mom and dad aren't ready for those yet. They both are coming out of the denial phase as dad's physical stature is much different now. We all do the best we can with the knowledge we have at the time and that's all anyone can do. Good luck to you!
I'd check his blood pressure at home (few times a day). If it dips too low that can cause dizziness. He's on a lot of meds and vitamins/supplements. Sometimes they work together and blood pressure dips to low. He many also have orthostatic hyportension which can cause dizziness when you get up from lying/sitting. This can be a side effect from meds or othoe factors. Keep at it and best wishes!
Hi - you mentioned your Dad has thyroid issues - that can also cause blood pressure issues upon standing or turning too quickly. My husband has this issue and has learnt over time to get up slowly and not to do anything too quickly - for his depression Vit d3 + K2 sublingual and Vit B complex with the lowest B6 you can get - magnesium + potassium 1 : 1. My PWP has had PD for 13 years now ( from onset) and Dr Joseph Mercola advised me to put him on these supplements in 2016 and the difference it made in him was amazing - before taking them he was severely depressed, no energy, no interest, cranky after a week he was a new man - he still takes these every day and his GP is very supportive - the reason for potassium was that he was getting cramping and hands and feet twisting - he also has CBD oil with 0.004% THC every night and that helps keep him free from dystonia as well. He takes Madopar 100/25 plus Madopar 50/12.5 at 8am - 12.30pm - 5pm - 9.30pm - he was taking 2 other drugs that I fought to get him off and we managed that over 3 months late last year after being on them for 6.5 years - on them his Parkinson's was bad and now he if almost normal - speech is much improved - cognition is improved -balance and gait much improved. Sorry to hit you with so much info - this disease is a confusing one for the sufferers and carers but we are the ones to see what is happening and the Neuro's have to listen to us and our observations as your Dad and my husband are not aware of what we see. My husband was taking Madopar every 3 hours but over time we have we have pushed him out to 4.5 hours and he much better now. To me your Dad could be getting too much and that does cause issues. Take care of yourself as well - it is a slow process to get things right but when we do it is great for everyone.
Thank you so much for your thorough and thoughtful response! You described my dad’s current state. It’s hopeful to hear that it’s possible to reverse some aspects of this awful disease. Everyone has been so helpful and I am taking notes. We go to his neuro soon so I’ll have a lot of questions to bring with me. Continued health to your husband and take care of yourself as well.
From my observing several friends on their PD journey it is the depression of feeling isolated from normal social interactions and seeing their care partners frustration as not having others to share their experiences. Our PD Support Groups here in San Diego are simply AMAZING for both the PWP (person with Parkinson's) and their care partners. At the monthly meetings they have speakers who are vetted that bring their new and proven ideas on all facets of care AND opportunities. Then they break into 3 groups: those with long term PD, those that are recently diagnosed and one for the carepartners. All administrative staff are volunteers who have or are walking this path with their loved ones. Also many with PD are active in the administrative tasks. So when they all get together the most valuable actions I observe are: SHARING what has and is working for them, tips on what to ask your doctor about (many have changed medications after proactively asking their doctors for a review). There are a few tears but the laughter and hugs and genuine caring abound! LEARNING and ASKING the questions to those they trust - others like them. And WHERE to go to have FUN - Singing groups, ballroom dance lessons, card groups, and even going on a CRUISE up the coast of California. Most important are the SOCIAL activities: they have four large socials a year complete with entertainment, bake sales, silent auctions, etc. All the things they thought they would be isolated from. They do not "waste their day!" And having an off day - just join in an activity via Zoom. Don't have a support group and need one? Contact an existing one and ask for help setting one up near you. Their mentor program is being shared with many other states. Parkinson Association of San Diego (web site) 858-210-5674 Paul will answer and share his wealth of info with you and even take you on a tour of the extensive website! Prayers and best wishes for you all. PLEASE be proactive!!!
Thank you for that insight and wealth of information! I'm being as proactive as possible, but I will always be that little girl to my parents. Listening to my suggestions has been difficult for both of them.
Been there with my mother's Alzheimer's. Very hard. That is why the support groups help them hear the information and suggestions from trusted sources and others of their generation. You are just helping them get connected. Another very successful offer from our support groups here in North San Diego are "scholarships". A few of the activities like ballroom dancing and the singing groups are free. But the exercise programs such as boxing (a big favorite), various forms of physical therapy classes are sponsored for several sessions. So can try them out before any commitment.
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