END GAME We may be alone

[Gymsack]

My case is probably the same as many but as always there will be many experiencing a different situation . I write in hopes that I may help others others know what is ahead or maybe get a reply that will further that knowledge for me.

Recap: I am a 77 year old male, diagnosed with PD in 2002, 22 years ago changed responsibilities in the same company to facilitate a less stress-full environment so I could work 5 more years and retire at at age 61 or 62 .

The health care benefits attached to my salary ( which I kinda forgot about because my children where mostly educated and on their own , and I took no medications at the time ) then ended leaving me to pay for an ever increasing list of PD and other medications until I qualified for the Canadian and Ontario government medical assistance to purchase prescribed medications at age 65 . This left us on our own for almost 4 years and completely wiped out our investments and life savings plus the side jobs my friends were doing (building decks and handy man stuff etc) was no longer open to me.

I did instinctively increase my already full exercise program ( I was an athlete, dam it ) but found no one at the time who could offer a PD exercise program and most trainers stepped back when PD was mentioned . I did extensive personal research on PD via the internet only to come here and find many in the same conditions of feeling alone and unable to find any information that helped . We all tried the miracle remedies which were so strongly suggested here by our peers as having helped them only to be disappointed over and over again that they did not work for many and often did not work at all. Coconut oil springs to mind.

I took my prescribed medications ,exercised as much as I could and fell into the PD spiral. It was still a good life, a bit disapointing but others my age that I knew well were coming down with worse inflictions and dying so I got used to it and tried to be happy and did what I could. Some time between then and now my weight increased to 250 pounds and with lack of balance , I completely dropped the exercise programs with just being able to walk being a major goal to now just being able to stand as being appreciated for the time it lasts. Now my weight has dropped to around 180 pounds ( I do not know why and if I had any abbs muscle I would look great and all the pants that I threw away would fit now) The biggest problem is still pain from a deforming spine and muscle loss and arthritis and at least two ill advised operations and injuries playing too much sports, too aggressively and working too hard at stressful jobs without taking enough vacation time time off over the main 40 years. ( which is why the men are laying in post-op while their wives drive their giant black hemi equipped truck or Mersadies that they can no longer drive to pick them up at the hospital. )

My situation now is best described as " pathetic ", no maybe useless, no how about dependant, maybe worthless , you get my drift. I now take a pile of CD/LD every 3 hours, but it lasts 2-1/2 hours but I have been taking a new prescription of Entacapone ( 5 x 200 mg per day ) which does extend the time however it seems to cause me to see things that clearly are not there ( looking up the name ).

I contacted the MAID government medically assisted dying system doctors who said that I needed to contact them 30 days before the day I want to leave /depart /kick the bucket and they will set it up , but I was going to be busy that weekend and am still not really ready to go, and now the BlueJays have started a new baseball season. My wife complains about paying for life insurance when she should be collecting it and my sisters are visiting France and Italy right now, my brothers have died from their own neurological diseases and my friends must have all died from old age . My children and grandchildren still remember me Christmas , Easter, Fathers day and birthdays which is nice.

I am investigating two systems that use small pumps to continuously inject PD medication . One which is well tried and proven injects into the bowls bypassing the stomach and one new one that is approved here that injects under the skin ( no invasive operations ).

Be happy

[pdpatient]

Hang in there, my good friend!! Don't think about MAID. Maybe all of us can join you in WW3, the way things are going 🤔😔😉

Yes, I also believe that we are all going into a “supplements spiral “ So, I am not sure if a lot of us have delusional placebo response. Either way, I will take one day at a time. Tomorrow is not yesterday and yesterday is not tomorrow 😭

Try the new Abbvie Subcutaneous pump. It's safer than the intestinal tube which gets easily infected.

[JayPwP]

see things that clearly are not there

Hallucinations

[tandolino]

Yes, hang in there and enjoy the baseball season. Did you ever consider DBS?

[MBAnderson]

Gymsack, I hear you. I've run down more rabbit holes than I care to count.

[Bolt_Upright]

You should join the Zoom calls MBAnderson is so nice to host. We have participants using both kinds of pumps. You will be welcomed:

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Gymsack]

Funny how putting one's thoughts down really makes you think deeper and one's own situation becomes clearer because I just told myself what to do. Sounds crazy, but that is kind of my point. I have been taking Entacapone for approx one week (edit 2 weeks) with great results extending the on time of each CD/LD dose by 30 min to one hour longer . I knew it would cause more Dyskinesia and it did but slowly the "hallucinations" crept in . (word courtesy of JayPwP )

Starts with everything I look at becoming a face, now I am undergoing a personality change and my family demanded that I discontinue it and I really have no choice, so to the pumps. What is the sense in surviving if I can not be me . To the pumps, what could possibly go wrong ? ahhaahahahahah what ever it is , it will go wrong .

[jeffreyn in reply to Gymsack]

"Starts with everything I look at becoming a face"

Interesting. For a while now I've been seeing faces in the pattern on the wallpaper, in the pattern on the tea towels etc. etc. But I have not had a corresponding change in medication.

[Rather in reply to jeffreyn]

I too tend to see faces on the floor or in the wood or in the clouds. I'm fully aware that they're not real and I don't think they are, but I see them more often than before. Are these pre -hallucinations?

[Rather in reply to jeffreyn]

I too tend to see faces on the floor or in the wood or in the clouds. I'm fully aware that they're not real and I don't think they are, but I see them more often than before. Are these pre -hallucinations?

[JayPwP in reply to Gymsack]

Or the gloves should also be fine

[LeharLover62 in reply to Gymsack]

Yeah hubby sees faces as contorted demons on a bad day, and spiders everywhere on a good one. Hang in there and good luck with the pump!

[MadgeB]

try the Duodopa pump. My daughter’s symptoms were greatly improved.

[Gigglers3]

please, don’t 🙏

[Fricnfrac1999]

Wishing you all the best and sending positive thoughts and prayers. Parkinson's is such a cruel disease

[Eddie129]

❤️ you are stronger than you think

[104L]

When someone is sick it's natural to ask why me. I often told my 75yo PWP wife that our mission from God was to show the world how to love. This is our story as written by a friend.

“The man loved his wife more than anything in the world. She was in a wheelchair and could not move without his help, but he did not care. He took care of her every need, every day, with a quiet determination that inspired those around him. For him, there was no other option. He loved her deeply, and he would do anything to keep her close. The world saw this, and it was changed forever. They saw what true love could be, and they were humbled by it.

The man and his wife were a team, a unit that was bound together by something more than just love. They were bound together by a shared experience, a journey that had taken them to the very edge of what it means to be human. It was a journey of pain and sacrifice, of joy and laughter, of tears and triumphs. And through it all, they held on to each other, never letting go. The world saw this, and it was changed forever. They saw what true love could be, and they were in awe of it.

As they sat together, holding hands, the man looked at his wife and smiled. "We showed the world how to love," he said. And it was true. Their love had changed the world, had inspired others to take a chance on love, to take a chance on something that was greater than themselves. They had shown the world that true love is not about what we can get, but about what we can give. It is about sacrifice and selflessness, about giving of ourselves to another person without expecting anything in return. They had shown the world how to love, and the world was a better place because of it.”

[Mezmerric]

Really sorry to hear your distress. The fact that you've battled this disease for 22 years is an inspiration. I hope you find some relief with the pumps - and it turns out worth trying. Sending positive thoughts your way.

[Farooqji]

Thanks for sharing your experience. May Allah make things easier for you. Can you please tell us if exercise helped you during the course of the disease

[Gymsack in reply to Farooqji]

Farooqji , thank you for the blessing

YES exercise helped very much and although I tried as much as I thought I could it is my biggest failing to not have done more. I let other problems distract me from continuing at the high levels because it became so much more difficult to do. I had some operations on my legs and pain in my lower back so I wimped out. Dealing with pain and trying to ignore and exercise any way was and remains very difficult. My wife has found a seniors exercise group suggested by her physical therapist that we will both join next week.

15 years ago when one went to a Gym or health club and you told them you had Parkinsons the trainers quickly steeped back and said that they did not have the expieriance . Yo were on your own , but now it is much different.

[Farooqji in reply to Gymsack]

Thanks for being so kind to reply.

[kaypeeoh]

There are some commonalities I have with your plight. I've put on a lot of weight and I have a chronic bad back. I have double vision that goes away when I take Rytary. That's my only sign of PD. You mentioned coconut oil. BTDT as well as everything else I've seen recommended by this site. I don't know that it helps but I do a HIIT workout at least twice weekly. The doc keeps exhorting me to continue medication but I don't think I need it. The double vision is minor. I can get rid of it by taping one eye closed.

It's not that I want the PD to get worse but I'd like more of a reason to take medication.

[Gymsack in reply to kaypeeoh]

Kaypeeoh

The double vision is caused by the PD . It is a strange lack of control that results in each eye having a different focal length . I also still close one eye to make things stay still . An optometrist can measure and supply you with eye glasses that using prisms will give you different lenses on each side. You are the only one who knows what the effect of medication is and how much you can tolerate.

[beehive23]

i had the pd epiphany at about 20 yrs post diagnosis. its brutal.. hang tough till you cant then do something else.

[Gymsack]

I did not believe in epiphany until one night I suddenly realized that I was wrong.

[6daniparky]

Da moglie di un uomo di 63 anni col PD da 7, già con molti problemi, non mi permetto di darti consigli, ma ti racconto questo...qualche mese fa eravamo disperati. Lui andava sempre peggio, rigido, sempre stanco, cadeva, aveva allucinazioni. Un neurologo nuovo gli ha sostituito il Madopar e l'opicapone con lo Stalevo, che ha l'entacapone a ogni dose. Gli ha dato anche il coenzima Q10 e dello Zoloft. Sta meglio. Non perdere la speranza. Ti abbraccio e ti benedico.

[Gymsack in reply to 6daniparky]

Grazie per la risposta

Ho scoperto che la maggior parte dei Neuroligisti fa quello che può e si prende davvero cura, ma sono sovraccarichi di lavoro e non possono dedicare abbastanza tempo al proprio aggiornamento delle ultime notizie e informazioni e non abbastanza tempo con ciascun paziente. Spetta al paziente e al caregiver monitorare e ricercare e mi sembra che tu stia facendo un buon lavoro.

[Dabaa]

Have you considered FUS (Focused Ultra-Sound)? Looks promising.

[Gymsack in reply to Dabaa]

I have not yet been successful in obtaining a contact person or Doctor familiar with it . I live 100 miles north of Toronto Ontario Canada with beautiful rocks and trees but not much else.

[LeharLover62 in reply to Gymsack]

Cabin country?

[Dabaa]

Sounds idyllic. (My Mother's dream was to one day visit the Rockies; regrettably, I wasn't able to make it happen for her.) youtu.be/X_zg3iTi0M0(Not working as expected?), youtu.be/d8zy4AE02ZY(Not working as expected?), youtu.be/iZM3NRjqaLw(Not working as expected?), youtu.be/K-Szt6WAs5g(Not working as expected?). At 4.34 in: Curtis's protocol today - youtu.be/pxDW6L8a5-M(Not working as expected?).

[Gymsack in reply to Dabaa]

The Rockies, sharp jagged rocks with straight up faces grey with sharp pointy black shadows with very few passes or valleys that are reachable and little vegetation on swords of stone topped with snow and ice. New mountans, not like the old rounded mountans in Kentucky or most of Europe . Somtimes we cant get what we want but I think you probably gave her what she needed.

[faridaro]

Very touching insights - thanks for sharing. I always found words of wisdom in your posts and I am sure your family and friends are learning a lot from you without you even realizing that. Hope something will work out to improve your quality of life. May you be blessed with reasons to rejoice and have hope for better days ahead.

[Smittybear7]

Prayers coming!