Trying to live with psp

[tamaradecarlo]

I have psp.I sit about all day I can't live with this disease.I have double vision writing this and eating. I'm slow as hel!,my balance is gone and I'm in constant neck pain.

Thanks for letting me vent

Tami D.

[Hidden]

Welcome to the site. Feel free to vent. That’s what we are here for as well as sharing information about the disease.

For neck pain Larry gets a massage once a week for half and hour to help loosen it some.

[SewBears]

Hi Tami,

Welcome to the site but I’m sorry that you have PSP. Pain makes everything so much worse! You might try a heating pad on your neck, or warm washcloths and maybe a neck brace to help ease some of the tension. Have you asked your doctor if they could prescribe something for the pain?

You might look into having a physical therapist come to your home to help with balance issues. I’m not sure where you’re located or what type of insurance you have but your doctor could put a recommendation in for you to get some help at home. Do you have anyone helping you now?

Have you tried placing a patch over one eye for the double vision? I’ve heard this helps with some people but not everyone.

It’s okay to be slow. I try to tell hubby to appreciate the things that he can still do on his own. Like getting the fork up to his mouth. Eating slow prevents choking so I’m glad that it takes a couple of hours to finish a meal.

I really hope that you have someone with you at home to help. I’m glad that you found this site. Here, you aren’t alone. We all understand what you’re going through. Vent away!

❤️from I SewBears

[Dadshelper]

Welcome. Try heating pads on your neck plus if able get someone to massage it. If you let us know where on the planet you reside we can tailor answers better to suit you in regards to medical issues, funding, outside of the home help, etc.

Vent as you feel necessary, no one will judge you. We have all vented at various times.

Ron

[enjoysalud]

I am so very sorry.

My son was 52 years old with his first symptoms of PSP----Double vision, fatigue, and slurred speech. A few months later the stiff painful neck. He use to always look for a high back chair to support his head. As time passed more symptoms appeared.

How old are you? Are you male or female, and what country do your reside? Do you live alone....have help?

Los Angeles, CA, USA

[Toddet]

So sorry to hear this Tami. It is a tough illness. My husband has PSP and does get very tired. He has double vision and we just went to our opticians and got some glasses with prisms that have helped him to read. Eating is slow, so we have tried to adapt his food. Soup is good as is chocolate mousse. Hope you have close friends and/or family to support you. Keep posting on this site as am sure more people with have helpful advice. Sending hugs

[ncgardener799]

HI TamiD, Welcome to this group of amazing people!!! Your symptoms are much like many of those afflicted with PSP. Where in this world do you live as services vary from country to country, and state to state in US. With more information shared you may receive more helpful responses from others on this site. There is additional information available on another site called, "smart patient". Venting is always received with compassion and support. Use others to help you cope. Hugs, Pat

[StayAtHomeDaughter]

I am so sorry. My heart aches for you and my mom and everyone in the throws of this terrible disease.

When my mom has double vision, I apply brain boosting essential oils to her forehead and the base of her skull, and put headphones on with brain relaxing music from YOUTUBE. She lays down and relaxes her mind. It often helps.

We have recently added Cranialsacral Therapy and Thai massage to her concoction of crazy ideas. The effects her physical and mental well being have been significant. She is still slow eating--and gets it all over her--but her sleep is no longer a battle and she is currently not in the valley of depression.

She reminded me that scared a sacred are two vastly different words made of the exact same letters.

[Railfan]

Tami, Like you, I have all those symptoms plus slurred speech making me sound like I've been drinking, observable cognitive issues affecting my executive functions and urinary urgency (not totally incontinent yet thank goodness). You started off by saying you are "Trying to live with PSP". That is a good frame of mind to start with. When we are being so afflicted by this disease that our bodies are becoming less and less ours to control, all we can do is TRY. Giving up is not an option. Living with PSP/CBD/MSA as our brain dies, IS. Others talk about venting being ok here and it truly is. Once the venting is done the next step is to learn how to manage the symptoms. The people on this site and the Smart Patient site (some of the same people by the way) can offer insight and support like no other. These people either live with the disease or are/were caregivers and also some people from CurePSP and PSPA that are compassionate and engaged. Please ask away about anything that you wish to know about or are afraid to know about.

Tony

[tamaradecarlo in reply to Railfan]

Thank you your reply means so much.

[richsanta]

Tami you vent anytime you want to, we are here for you. I am a care giver for my husband who has PSP. He shares the same sentiments that you do and I know when he shares his feelings and I listen it seems to comfort him. So as I said vent anytime. Connie S

[tamaradecarlo in reply to richsanta]

Thank you all

[Mamacass58]

For David's neck and leg pain I rub on Real Time Pain Relief Hemp Lotion and Maxx Pain Relief. They are made with essential oils. He sleeps well and wakes up with no pain. I rub it on his neck in the morning. I rub it on his legs and bottom of his feet at night. He also takes Hylsnds Restful Leg pills at night. Www.

Rtpr.com

[tamaradecarlo]

Thank you so much

[tamaradecarlo]

Thank you all so much

[Red1990]

Hi Tami,

I remembered your post today. My mother has had double vision again for a few days. Her clever PT put a couple of strips of bandage tape on the outer edges of her lenses..we had a pair sunglasses with us...narrowed field of vision.

The double-vision went away in less than an hour. Hope this helps!

[tamaradecarlo in reply to Red1990]

Thank you so much