New to the group.I'm new to this site. My lo was dx in August of 2017 with PPA and FTD, he then was dx with PSP in October of 2019.

I'm new to this site. My lo was dx in August of 2017 with PPA and FTD, he then was dx with PSP in October of 2019. He is getting weak and has a lost 8 pounds. I just want to know what to expect, the doctor said when we went in that he thinks Rick will be bed ridden within a year. Is there anything I can do to make the muscles stronger? Should we exercise, will it help, I am at a loss. I just want to know what to expect. Thank you for answering if you are able to.

[raincitygirl]

Hello Penny

Welcome, and sorry to hear about your hubby.

My hubby died after about 5 years with CBD, but his first tentative dx was PPA because loss of communication was one of his first symptoms.

For what its worth, we kept exercising (aquafit, walking with rollator) up until 3 months before he died, snd we did neuro physio until the week before he died. Personally I’m convinced it’s helpful though I have no true proof. I wanted to push off the “bed-ridden” phase as long as possible and in the end that’s what actually happened.

Hugs to you ❤️

Anne G.

[Kevin_1]

Hi

Adding just a little to Anne's repy, with which I agree.

Keep piling the calories in. It's not well understood, but there seems to be an issue where the body becomes far less efficient at using them.

It's very hard to know just when someone with this illness will loose this ability, or that. However making use of hands and legs is thought to keep them going longer.

Sorry you are both having to deal with this.

Welcome

Warmly

Kevin

[AJK2001]

Firstly doctors know very little about this condition and how it progresses, so don't allow his prediction to colour your thoughts.

To pick up on Kevin's point trying to control weight loss is important, get a referral to a Dietician, they can prescribe nutritional supplement drinks. Companies such as Wiltshire Farm Foods in the UK do ready meals which offer smaller portions with similar number of calories to standard portions if he can no longer handle usual sized portions. And if there are calorie rich things he enjoys, well let him indulge ! Again in the UK there are "Pots For One" desserts, some of which the dietician told us were so energy dense she couldn't prescribe anything better & Mum did enjoy them !

[Katiebow]

So sorry you have the need to visit this site due to your husbands diagnosis, I assume you live in the UK, if so get all agencies onboard as quickly as possible, this will include Speech and Language Therapist, Physiotherapist, occupational Therapist, your local hospice (vital). The Hospice provide a daycare centre with activities, meals and trained staff for a day a week, my husband was reluctant to go at first but actually enjoyed his day a week there and I was reassured that he was well looked after. You will need to get Power of Attorney for both Health and finance and the hospice will open up a conversation as to what treatment your husband would wish to receive as the disease progresses. I'm sorry if this seems a little blunt but you will find all of the help and advice they can give invaluable and will help you, your husband and your family on this journey. I hope this helps

Love Kate xxxx

[SewBears]

Not everyone is the same and I don’t know if your husband can exercise but I thought it might help you to know that my husband improved. I hope that you will find this encouraging:

I quit my job in the summer of 2018 to take care of my husband full time. He had reached bedridden phase and he was completely confused about everything. I seriously thought that I only had a few months left with the love of my life. Becoming my husband’s dedicated advocate helped to get him to the right doctors. A dramatic change occurred when we found a neurologist who tried different medications and lots of patience. We took months to see what medications worked and which ones either had no effect at all or made him even goofier. All this to say that my husband actually improved with swallow, speech, physical and occupational therapy, plus finding a good medical cocktail. My husband is not the same man that I married but he’s also not the same man from almost two years ago. He’s having a good quality of life considering his diagnosis. I truly hope that I can continue to stay on top of his ailments and stay healthy myself. A challenge none of us should have to deal with. PSP, CBD, LBD and all of the other diseases just suck!

[Hidden in reply to SewBears]

My husband can hardly get up from a chair or out of bed. He drags his left leg and can’t walk without holding on o the walker or a wall. Thanks for giving me something to think about.

[Drjazz]

I was diagnosed in Nov. 2019 with FTD and Corticobasal syndrome. I have lost over 15 pounds since last summer without trying. I have a lot of trouble walking and my manual dexterity is going fast. From what I understand exercise may help prolong function but has no effect on the course of disease.

[raincitygirl in reply to Drjazz]

Glad you are still able to communicate well, DrJazz - small mercies.. 🥰

Anne G.