Muscle tone: Hi, sorry it's a long message... - PSP Association

PSP Association

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Muscle tone

penny1956
penny1956

Hi, sorry it's a long message. My husband was dx in October he had the eye exam, and saw the neurologist both agreed that he had psp. Since then he has lost the ability to walk without a walker or he falls. I wanted to ask is it normal to loose muscle in arms and legs? My love has fallen at least 2 times a month if not more, he has gotten weaker, he uses a walker. When trying to get up out of the chair or bed he struggles. Then when he does get up he is dragging his right leg. Its hard for him to step up on the stairs to come into the house. Should I have him doing some type of excise, I'm afraid that if I do he will get hurt?

He uses a spoon to eat because he can't use a knife or fork anymore. He sleeps until 1-2 pm and goes to bed by 9-10 pm. All he does is watch tv all day, yes I am still working because I can't afford to retire. I do have someone coming in 3 days aweek. One of our daughters stays with him on Mondays.

Thanks for your help, and sorry if I ask to many questions.

13 Replies
oldestnewest

Hi

Your describing PSP / CBD to a T.

You might want to read some of the articles on both the PSP Association website and those on Cure PSP. Both are excellant. Most of us avoid that at first, having to stare into the glass showing what may come and all of that. Not easy, but it will give you both a good grounding as to what to expect and info. on those services which are really helpful.

For examle, get as much dentistry done as possible. It is highly likely that your loved one will eventually have difficulty opening their mouth. If their teeth are good then you won't be facing full anaesthetics for a tooth extraction, or fillings. I mention that because they have both missed that one!

Warmly

Kevin

penny1956
penny1956 in reply to Kevin_1

Thanks Kevin_1

Adding: You said, "Hi, sorry it's a long message."

This is an unusual forum. We have the patience for messages much longer than that, manyfold. Rants are fine too... we all need to rail at it all from time to time.

Warmly again

Kevin

Welcome to the site. Your description is so familiar. I'd suggest not letting your husband walk alone, even with the walker. If possible get a gait belt, it will give you something to hold on to and help control a fall. Don't try to stop a fall unless you are strong enough to hold his limp weight. It's safer for both of you to gently lower him to the floor, then work on getting him back up.

Invest in large handled silverware, think handle sort of screwdriver handle size. These will be easier for him to hold. Use a pie tin/dish instead of a plate, it'll give him an edge to push the food to and onto the spoon without falling off a plate.

Ask any questions you have. There is a wealth of info/knowledge amongst the members and we're happy to share. If you let us know the general location in the world you reside we can tailor answers better, especially when it comes to social/medical services available.

Ron

penny1956
penny1956 in reply to Dadshelper

We live in Riva Md outside of Annapolis Md.

Hola. Sorry my English is not my language but I try to Tell you something. PSP is different

of Párkinson desease? Because I have PD several

years ago. I am 75 years old and I can explain about my condición and many very good excersise. You can write to me if you think is well for your husband or not.

My best wishes

My nickname is Ponty

penny1956
penny1956 in reply to gmunsot

Thank you

penny1956
penny1956 in reply to gmunsot

Hi Ponty, just wanted to say hello and tell you I hope you have a good day.

Hi Penny

Welcome to the best website for PSP carers and sufferers! My husband is also seeing a deterioration in his mobility at the moment, tho he can no longer use his walker. I am writing to tell you of a wonderful piece of equipment that may help. I find that the big problems Ian has are with transferring from one seat/toilet/bed to another. Just a couple of days ago our Able Assist arrived, a cheaper version of a Sara Stedy. Look it up on YouTube and you can see it's purpose I wish we had been able to get one earlier, as my beloved 's legs are sometimes too weak for him to use it, especially towards the end of the day, but even if it is just for a few weeks, it will have been worth it.

I went to a local age support charity and they have contributed half the cost, with the agreement that I will donate it to them when it is no longer useful. Just an idea.

Not sure if that helps.

If you look into past posts you will glean so much help and support, especially on those days when you are close to despair. So many of us carers have found new resources of humour, patience, wisdom and friendship on here.

We are all here to keep each other smiling and strong through theinexpressible trials we and our loved ones endure.

I am so impressed that you are dealing with all of this as well as working, but what a drain that must put on you. Good that you have support, though.

And although doctors are wonderful, the actual issues you face from day to day may need advice from those who are dealing with domestic issues on a daily basis. I thank the Lord for information, advice and emotional support I have received here. I hope you find the same.

Much love

Juliet

Hi penny1956!

First: If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

Falls: From 2008 to 2016 my wife has fallen 11 times, some of them serious. From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two serious falls that nobody related to PSP.

Avoid falls and hits: Learn transfer techniques. Gait belt with handles (cloth loops) to grip, walker, cane, Replace breakables with non-breakable items wherever possible. Make sure there are no tripping hazards (carpets, etc.). Put foam corner guards on any square corners that patient could fall on, like shelves, tables, coffee tables, etc. Adapt the floor, shower, toilet and washbasin as soon as possible.

My wife has regularly used a wheelchair since June 2016 (abrupt decline four and a half years after the onset of the first symptom and after the hip fracture and the corresponding surgical intervention). The wheelchair is made of aluminum and is foldable, easily transportable in the car trunk (aluminum wheelchair is Ergo Lite 2 from KARMA brand). Weight supported: 70 kilogram.

After hip fracture no more falls but steady progression of PSP symptoms.

Hoping to be useful.

Hug and luck.

Luis

Have you had OT & Physio assessments recently? OT can recommend equipment to help you both safely manage the situation(which will change, so don't be afraid to ask for another assessment) and Physio can give exercises that can be done in a chair. As Luis says it is important to keep exercising to maintain mobility as long as possible and it will help with things such as constipation as well.

My Mum could not mobilise on her own safely the last 3 years of her life and the carers were not prepared to risk walking with her but I still got her to walk (with walker) to the bathroom until the week before she died and I am sure this helped her stay as well as she did. She was also very good at doing her exercises and more than once almost caught a Physio on the chin as they asked her to lift her leg and she was able to lift it higher than they expected!!!

Greetings Penny. First off, your post isn't long. Just check out a few of mine and you will rest easier! :-)

Along with carers, there are also patients like myself on here. We are a family here and as such, no length restrictions or question counts will apply. Welcome to our family. We are from all over the world, so someone will be along soon after any posts you make. I am in Florida, myself

You had concerns about exercises and possible injury. After a bruising fall from a treadmill, that I was walking less than 0.8 miles per hour on, my wife removed it from the house. I am able to still walk short distances and have set a goal of 2000 steps a day. My wife has also scheduled into our routine, exercises that I can do while seated. My wife purchased a mini exercise bike thing that is just the peddles and tensioner. I sit in a chair to use it. Those peddles aren't counted on my steps. I'm probably getting more than 3000 steps in total. This exerciser is also able to sit on a table so I can exercise my hands and arms. As a final note, we now live in a very active golfing retirement community. Though I can no longer golf, there is a lot to do here. One of those things is instructor led exercising in one of our community pools. This has an advantage of resistance from the water and buoyancy to ease some of my muscle rigidity.

Tony

Hi...it’s important for you to be your lo advocate now by having his MD order an in home evaluation for in home Physical Therapy and OT....he must be on an exercise program or he will become weaker each day....being as active as possible is so important ... safety and movement are your goals for him....please keep I touch with questions and thoughts..,we are here for you..

Take care....Kathy

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