PSP at 63

[Mags061155]

I’ve just been diagnosed with PSP and I’m only 63 years old. My dear dad had it as well. Is there any advice anyone can give me to get over this dreadful shock.

[Dadshelper]

Welcome to the site. Sorry to hear of your Dx, and the fact your father went thru PSP also. I am not sure what do to for the shock, maybe sit down and make a bucket list. Spend time doing and visiting things you always wanted to. Since you are familiar with PSP you know sooner is better then later.

Ron

[raincitygirl]

Dear Mags, I'm so sorry to hear about your dx. Was this by a neurologist? The experts keep saying "no evidence of heredity"...You've got to wonder!

Ron's advice is good: whatever the situation, acting on that bucket list is a good plan! Also keep physical activity up as much as possible: it seems to be the single most consistent recommendation by medical experts. You also may want to look up expert opinions on curbing sugar: there's some theory that sugar may promote overgrowth of tau protein in the brain.

Keep in touch.

Anne G.

[honjen43 in reply to raincitygirl]

Have often wondered about effect of sugar. My husband was an "addict", and then suffered from type 2 diabetes. He took metformin. He also developed CBD and I have always wondered just how much his diet might have affected him!

He did not seem able to control his desire for sweet things, or for cheese - but again that may have been part of CBD effects.

Will have to look up effect of sugar on brain!

Hope you are doing OK, Anne.

Hugs

Jen xxx

[raincitygirl in reply to honjen43]

Right! All docs seem to think sugar is evil anyway, and I've read several brief bits about sugar and tau.... But surely it would have to be a combination of sugar and...?? Otherwise cbd/psp would be so much more prevalent?

And thanks for asking, Jen - Christmas actually wasnt worse than other times so far ;-). So that's a good thing!

Hugs to you (in the middle of summer now? I envy you! 🌴🌞👍

Anne

[honjen43 in reply to raincitygirl]

We are indeed! Lots and lots of rain over Christmas, now some heat! But more rain and heat due. At least some places will stay green!

Had visits from my family before Christmas, then a day with youngest son and family. About par for teenage kids these days - can't get a word out of them! Spent rest of time so far cleaning, gardening, reading, but feeling tired!!

Probably reaction to moving house at end of November! Gradually getting settled - but planning renovations to kitchen (ughh!) then redecoration throughout. Very happy with my choice. Smaller, neat snd with character! Neighbours are great - about 12 folk of my age. Bit like a mini sheltered accommodation but still in charge. Looking forward to making the changes but will have to wait till end of hols before things begin.

And have visit to look forward to, seeing sister-in-law who is out from UK (Huddersfield).

Hugs

Jen xxx

[raincitygirl in reply to honjen43]

So glad it was the right move for you - and being busy with projects = ✔️

❤️

[sasmock in reply to raincitygirl]

My dad was a total sugar addict for almost all of his life too. My take on it, from what I've read of the research, is that sugar/refined carbs adversely affect the gut bacterial balance. There is a strong link with neurological conditions like Parkinsonisms and gut bacterial imbalances. So I guess the effects would depend on each individual's bacterial make up. I did a stool test on my dad when his first symptoms started, and we were all wondering what on earth was wrong with him. The test showed high levels of unfriendly bacteria and very high levels of 8-OHDG (marker of damaged DNA). He also smoked heavily for years and drank quite a bit of alcohol. So not sure which habit most influenced his health, or a combination of all three.

[hubetsy in reply to raincitygirl]

Hi there. Scary that same Dx as father. I too have growing concerns for my son. His father just passed in October after a long struggle with PSP. His father had a Dx of PD but I recall many similarities between my husband and his father’s symptoms. My husband’s paternal uncle died of “Lou Gehrig’s” or at least that was the Dx in the 1960s. Feels all strangely tied together with the neurodegerative symptoms. Especially when I recall my mother-in-law saying the PD was so bad they had to give him massive doses of Carba Dopa Leva Dopa. Yikes. I have looked and searched for anything indicating a genetic basis but haven’t found any except one.

[raincitygirl in reply to hubetsy]

Maybe it was just escapism, but I always took comfort in the constant reporting of heredity not being a factor - Enough to worry about, right?!

[hubetsy in reply to raincitygirl]

I know! Me too. The same belief about PD my husband held onto for all those years. Fear for my son's health drives me to desperately rule out the heredity factor.

I am now trying to find out if any cells remain of my father-in-law brain. I know it was donated, I know not where! Family members who would have remembered have all passed. I'd love the researchers who now have my husband's brain have access.

It's the possibility that the ASL was actually PSP and the odd similarities between my father-in-law and husband's symptoms...It's puzzling and worrisome. One brother-in-law is now getting to the age when my husband began to show symptoms. Needless to say, I am hoping and praying not but I worry just the same.

My husband lived to 73 years, 6 months. He worked diligently against PSP with regular (daily) exercise. He ate well (after he could no longer walk to get treats : D. If I worked half as hard at staying fit as he did, I could be a competitive athlete! In the end, swallowing got him. Robbed of his ability to eat deprived him of nutrition and finally medications (antibiotics). His refusal to get a feeding tube still troubles me.

[raincitygirl in reply to hubetsy]

Happy New Year hubetsy; as long as your son lives a pretty healthy life, there really isn't anything else he or any one can do to alter his physical destiny, so as my GP (of all people) says: "Chase the light!"

❤️💛💜. Anne

[hubetsy in reply to raincitygirl]

You are so right. None of us has any guarantees. Happy and healthy new year to you too!

[Hidden]

Hi Mags. SHOCK is something we each deal with in our own unique ways. I bake cookies or throw axes whenever possible. A friend l met on this site makes bread. You know you better than anyone... close your eyes take three deep breaths and your answer may appear.

My mom had PSP so when l started falling l did not go to a doctor for two years because l just knew l had PSP too. Finally when l turned 70 I was tested. I still believe l have PSP even though neurologist says it is nueopathy.

I am making my to do list... and making my home handicapped accessible in little ways.

Search some of the old posts if you have time. It helped me when l joined this site.

Sending you hugs... Granni B

[Mags061155]

Thank you all for your kind comments.

[daddyt]

Hello Mags, Welcome to the group that no one wants to belong too, sorry it was under these circumstances. I was aged 57 when I was diagnosed over 5 years ago, looking back there were signs that were dismissed. It is rare - less than 5% where PSP is familial... but not impossible. No two people will present the same and what might help one, may not help the other. There is an immense pool of real shared experience amongst the forum members, who are mostly caregivers and they keep it real - you need to know that. For those here who have read or are reading my book, you'll know I love to use acronyms. That said, I'll share with you my protocol I follow daily - DEAP

D - Diet. I'm on a high protein diet... to help maintain muscle

E - Exercise, exercise, exercise

A - Attitude, I don't let the terms of the disease define me, I redefine the terms

to better suit me and perhaps others on the journey.

P - Prayer

So, just knock on the door there will always be someone here to answer.

Tim

[enjoysalud in reply to daddyt]

Tim, I wish I had kept the date. There was a science research sharing on NPR (morning edition) about a study that was done with older people and protein intake. They increased the protein and found that balance issues, energy, etc improved. One woman shared that she had not worn heels for several years and was now back to her 3 inch heels. I have increased my protein a little, started B1 (now up to 400mg at morn and lunch) and found my balance improved, aches and pains less. I DO NOT SUFFER FROM A NEUROLOGICAL CONDITION, only from 78 years on this earth, and jogging/walking 4 miles, five days a week, since 1974. I figure that's where my aches and pains come from.

Blessings from Los Angeles, CA, USA (just returned from 7 days up in Portland, OR, over Christmas....cold and wet up there).

[daddyt in reply to enjoysalud]

Good for you Margarite, Keep on moving. I hope you had a good visit I Portland, despite the unfavourable weather.

Blessings to you as well,

Tim xx

[Hiking13]

Dear Mags

I am so sorry about your diagnosis. My advice to you is to live life to the absolute full go and do everything you have ever wanted to do, build up some wonderful memories so that when you are no longer able to do so much you will have lots of happy photos and memories to look at and talk about. I lost my husband to PSP earlier this week but we had many happy hours talking about some of the wonderful things we had done together and often looked at photos together. You have come to the right place as this site is a group of lovely friends who offer amazing support and comfort to each other. I will be thinking of you take good care and keep asking on here as there is always someone who can help

Love Sarahxxx

[Mags061155 in reply to Hiking13]

Thank you Sarah xx

[crab2093]

Oh Mags061155 that is an awful diagnosis. You know, you have been through it with your Dad... I think, do as much as you can, move as often as possible, big moves( swimming, walking, PD warrior etc) and fine motor (games like connect 4 and checkers), brain games and plan to be positive. Don't give up. You probably have a lot more years than you think.

[Mags061155 in reply to crab2093]

Thank you crab 2093 xx

[Sam_S]

I am very sorry to hear that you have been diagnosed with PSP.

If I had to give you one piece of advice, the single most important one would be to find a way to communicate when one loses the ability to speak in the advanced stages of PSP.

Also, staying healthy both physically and mentally does help. So eat right, and stay active both physically and mentally.

Sam

[Almor957]

Eu acredito que o óleo de cannabis (óleo de CBD) pode ser a única alternativa ao tratamento desta doença (PSP). Existem vários depoimentos de que este óleo lida com doenças neurodegenerativas positivas. Mas também é muito importante que o paciente tenha uma dieta saudável baseada em uma dieta cetogênica ou mediterrânea ou paleo (são dietas muito edênicas). Quanto ao petróleo, acho que terá que ser um alto teor de CBD com o objetivo de ser mais incisivo.

Desejo a todos um Ano Novo cheio de sonhos e belos e longos momentos de paz e alegria. Espero que esta virada do ano represente uma reviravolta para melhor em sua vida. Feliz Ano Novo!