I believe my dad is close to the end.
What does the end of Parkinson's look lik... - Cure Parkinson's
What does the end of Parkinson's look like? I know it is different for each person but I also know that there are some similarities.
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tigger2368
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43 Replies
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So 😐
• in reply to
Meant So sorry.
why do you believe that?
First he has had PD for over 15 years and secondly he is declining quickly. He was a brilliant mechanical engineer and now he can't get dressed by himself. He can barely eat by himself too.
I am sorry for your situation.
The Parkinson's Foundation has some good articles and videos about the end stages, as do other Parkinson's organizations. It's easy to find numerous good articles online about the end stages. As you recognize, it's different for everyone, so it will be hard for anyone on the forum to give you precise description of the challenges you face.
I wish you the best.
parkinson.org/Understanding...
Marc
Thank you. I didn't know if anybody could give me any other insight. I read everything I can because I am a Rock Steady Boxing coach so I deal with more people with PD than just my dad.
You understand then it is such a sensitive situation anybody would hate to comment and be wrong. Thank you for all you do for PWP.
Parkinson’s thiamine hcl
m.facebook.com/groups/23226...
Parkinson’s relief web page
Diagnosed 2012
My regimen:
The positives after B1: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed most motor and non-motor symptoms...
Entering my 8th year post diagnosis and have not fallen, not once, to the surprise of my neuro.
I follow this regimen:
4x day, C/L 25-100mg IR. Bedtime 1- C/L 50-200mg ER.
2 x day (8 am 1g, and 2 pm 1g) vitamin B1 (as thiamine HCL) 500mg easy swallow capsules.
Magnesium L-Threonate 2,010mg per week.
Doxazosin 8mg, once daily.
Pramipexole 0.05mg, once nightly.
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. Aon important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
tigger2368• in reply to
Interesting. I have been reading about this so I will look into it more. Thank you.
I am sorry for your dad and the situation you both are in.
Here is a link that will answer most questions you may have about B-1 :
healthunlocked.com/parkinso...
Art
"He was a brilliant mechanical engineer"
B1 deficiency is especially common in people with a higher IQ.
Also look into TTFD supplement.
hormonesmatter.com/ttfd-thi...
Why is it that B1 deficiency is more common in people with higher IQs? So interesting to me!
Perhaps folks with higher IQ are more likely to seek evaluation...
Dr. Derrick Lonsdale - " I was frequently able to prove that the patient was deficient in vitamin B1 by means of a blood test and the symptom disappeared with administration of pharmacologic doses of the vitamin. I also became aware that even minor energy deficiency in brain affects the ANS, signaling symptoms that are usually ignored or attributed to other causes by physicians. I also learned that the smartest people were more at risk. This, at first sight, appears to be ridiculous until you realize that the brain consumes an enormous amount of energy. If a person is endowed with a brilliant brain, the energy requirement will be proportional."
His observation matches mine.
I have not heard that before. Interesting!
A million thanks for sharing this link! It dovetails with my research and theory into causation of PD, ALZ and ALS - cyanide exposure and poisoning.
SE
You're welcome. It is one of the reasons why I recommended TTFD on your "When is it not Parkinson's disease?" post a while back.
My mother had the highest IQ in her class, but her deterioration was severe by the time she was in her 40s. She was definitely thiamine deficient, just as I was.
I hadn't been able to connect the dots until now. My mother was brilliant, to see her descend into dementia was tragic. It's the thing that troubles me most.
Do you have a source for TTFD that you reccomend?
How are you doing now?
SE
I could see that, and yes it's tragic to see some of the brightest burn out so quick.
My father in law was another one, a brilliant NASA EE PhD, always 1st in his class, was diagnosed with PD but I have my strong doubts, especially because he had no rigidity, tremor, nor dyskinesia.
I recommend Dr. Lonsdale's book.
amazon.com/Thiamine-Deficie...
You can find the quote here.
hormonesmatter.com/nasal-cy...
I noticed my own deterioration by my mid 30s, but my situation was even complicated by getting floxed along with other pharma meds. I'm doing better now.
I received prophylactic IV levaquin for a suspected bladder infection that lab tests showed I didn't have - prior to surgery, and then had an adverse event during surgery from succinylcholine. These events definitely accelerated my ALS. You might be interested in this paper.
ncbi.nlm.nih.gov/pmc/articl...
It's good you're on top of this, thank you for all you do to help others.
SE
Oh yes, know all about it. It took me a long time to connect all the dots. It's horrible that the drugs are still out there doing so much damage. We all help each other here. : )
As far as the TTFD source goes, I take the one recommended by Dr. Lonsdale. Either Allithiamine or Lipothiamine by Ecological Forumulas. Lipothiamine definitely seems to have less filler (and much smaller) and enteric coated for better absorption, but Allithiamine works just fine for me.
Joanne_Joyce• in reply to
Roy, it is so good to learn you are doing so well now. Did you actually visit Dr Constantini or are you treating yourself?
• in reply toJoanne_Joyce
Online consultation
tudorwood• in reply to
Hi Roy, very interesting, my wife who was diagnosed in September 2016, after contacting Dr C she has been on 2ml thiamine injection once a week for the last 3 years with out any improvement, her medication is 5x125mg madapar daily, 2x125mg CR capsules, plus 2 x 150mg pregabalin for pain, do you think she is taking the right dose? Too much maybe or not enough ?
• in reply totudorwood
I don't know why the IM not benefiting
• in reply totudorwood
The challenge, you must make it work. What is there to look forward to? Parkinson’s progression!
The last few weeks my husband had progressive dementia and the last 4 days his nose turned blue. I was shocked when he died, his heart had seemed fine and he was still walking around ok. He died in his sleep.
He was a very smart civil engineer and quite athletic when he was younger..
Sounds very familiar. He was probably severely B1 deficient by 50s or earlier and if he had sweet tooth probably made it worse. Drinking alcohol on top makes it much much worse. They seem to go suddenly with dysautonomia or sudden collapse even after a good day.
I hope you’re doing well. Take good care of yourself now.
He had a big alcohol problem for awhile, but he never card about sugar, he loved salty things. Towards the end he would try to focus on his studies ( he was an options trader)or chess, and the extra concentration was like a knife to his brain that took several days to recover from.. He was taking B vitamins,sporadically but, i must say your theory is very interesting and sounds possible. Thanks for your good wishes, life is much easier now. We were married for 58 years.
People on this site are often a lot more knowledgeable than the doctors.
The problem is taking B vitamins and the multi vitamins will not always help at the usual recommended doses. This is also the reason why most people don't ever get catch up to the idea of possible nutritional deficiencies because most do supplement nowadays.
Because of aging, genetic differences, and transporters/enzyme issues, what gets depleted out of brain don't always get replenished as easily. Drinking alcohol is absolutely one of the biggest offenders, as could be seen in clinical B1 deficiencies such as Beriberi and Wernicke-Korsakoff syndrome. If the deficiency is caught early enough it has a chance of getting addressed, but in most cases the subclinical symptoms almost never get properly diagnosed until too late.
What I've seen of people who lose their PD spouses after long battle is almost a liberating relief. They sure do miss their loving mates, but not the PD.
You did great taking care of your husband. I'm sure it wasn't easy.
I tried and I tried and I worried endlessly, and we were going to the doctor 3 times a week to try to 'fix" things. Parkinson's just ends with the inevitable ,and I can't say anything ever worked for long. I didn't know how awful life had become until his life was over. It is a dreadful, stinking disease!
PS. Thank you for caring!
Might provide insights?
Advanced PD: stages 4 and 5. Mixes of...
My mom passed away last December. She had lived with PD for almost 25 years. She had to go in a nursing home for a month when her husbad was hospitalized. It seems she gave up when she realized that end of the journey was nearing for them both. Spouses often try to keep going for each other.
I thought I would be more afraid when my mom transitioned to active dying, but each phase prepares you for the next.
As I write this, I think it might be too graphic, but this is what happened.
The signs that a person is dying can begin a few months before they are actively dying, which is about 2 weeks before death. My mom became more demented but had good streaks. She lost interest in food but still accepted sweets. Her sleep/wake patterns were more disrupted until she began sleeping more than she was awake. She started having TIAs and became paralyzed on one side (I blame polypharmacy and the quetiapine that hospice kept pushing for the TIAs).
The big sign is the increase in autonomic dysfunction, hospice couldn't get a heart rate on the pulse oximeter 3 months before she died and her hands and feet were cold. She had more difficulty swallowing, wild swings in body temperature and shallow breathing. I thought a stroke or loss of respiratory drive would take her quickly, but it didn't. She had very painful muscle cramps. When active dying begins you know it. Two days before she died, my mom rallied and had a really good day, and then she never regained consciousness.
Winding down of life is different for everyone - pulse, blood pressure, temperature and breathing are the metrics that tell you where you are on the journey.
My prayers to all no matter where you are on the journey.
SE
If not already in place, I would reach out to hospice for assistance. You should not go through this alone.
Prayers and peace.
SE
I have tried to get hospice but my mom is against it right now. I will not go against her wishes.
well tigger i have had p.d for around 7 years now and the only thing that bothers me is the pain in my back from siatica the p.d dont bother me at all i exercise every day im 73 so just try taking him out for walks every day or get other people to go with him give your dad lots of help by getting him out every day or swimming long walks how old is your dad.regards john.
Hello John. My dad is only 76. He is now basically wheelchair bound due to other issues so going for walks is not possible. I have 3 caregivers right now and the one that is with him the most during the day tries to get him outside as much as possible. He sleeps alot and can not sit up in his recliner anymore. We have to use wedges to keep him up straight. Conversations are not happening. His dad had PD also.
well tiggerim sorry to hear that about that about your dad i live alone i do every thing my self i walk 7 days a week about 7 kl per day im in pain first thing in the morning ive had things done to my back 5 times but its still the same so i keep on trying to get it fixed as i know im in trouble if i stop so all you can do is help your dad the best way you can just keep him moving if you can give him lots of encouragement regards john.
Is anyone tracking your dad's vital signs? Is he still seeing doctors? This is the service hospice provides in their home. It's predicated on keeping people at home instead of in the hospital or nursing home when they are no longer seeking interventional medical treatment. My mom had hospice care for over 2 years.
Do you have a fingertip pulse oximeter, blood pressure cuff and digital thermometer? You can check vitals yourself.
I have a high quality pulse oximeter for myself - it picked up my Mom's weak vitals when the hospice nurses couldn't. We sat at the table and passed it around so you got a visual of what it is normal and how abnormal her heartbeat was. This was 3 months before she passed.
We have a nurse that comes once a week to check every thing and we know how to check things. He still sees several doctors (regular, neurologist, movement disorder specialist, etc)
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