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Topic ? about therapy, life expectancy Go to previous topic Go to next topic Go to higher level

By overwhelmedinFL On 2009.09.20 07:16
Please clarify for me.

I see on here where some have said that with therapy PD patients don't see improvement. I know it wasnt stated as a fact like that, but is that the result more often than not?

Reason I ask...the doc at my mom's movement and disorder clinic told us that if mom got good therapy for her gait and posture that she could improve and he acted like this was a sure thing, he was VERY positive about it. Her posture and gait has deteriorated only since March when she became the primary caregiver for her husband. We are hoping her move to Indpendent livign apartment (and her husband going to adjacent ALF) will give her the freedom to focus on herself and get BETTER. Are we clueless?

Also...once a PD patient starts progressing faster like my mom has, what is the typical life expectancy? I don't know mom's stage she would be in but she just stopped driving, her posture is very bad, she is 71 and has had PD for about 10-11 years. She recently started falling and is now dependent on a walker. How long do we have with her? I know there is not text book but we don't really know what to expect and we are all (me and my 5 siblings) freaking out a bit because she moved away from where we lived and don't get to see her as often and this year has REALLY progressed and scared us.

She is moving back to where we live and we will get much more quality time.

This stinks.

By LOHENGR1N On 2009.09.20 09:06
Overwhelmed, With therapy Your Mom's gait and posture might improve somewhat. However any improvements will be temporary, as the disease progresses it will in all likelihood continue to cause Her gait and posture problems. This said, it doesn't mean She shouldn't try it. She could prevent some falls now with therapy (saving on trips to ER for stitches, broken bones and concussions).

As to how long? No one can answer that now. It depends upon many factors. What medication She is on, what medication She might still take, (marked improvements in some instances have been achieved for a time by introduction of a new medicine or adjusting med's already being taken.). Also the fact God forbid one get hit by a car or struck by lightening! In My case My Neurologist told Me when I pressed Him for an answer to how long back in 1986 when diagnosed probably 15 to 20 years! I'm still here and doing relatively well. I'm glad She's moving back near You and You'll be having more quality time. Take care, best of luck and hang in there.

By Pearly4 On 2009.09.20 12:03
On a personal basis we found therapy not at all helpful because of my mother's deteriorating mental condition - she wasn't able to remember instructions or able to implement them without constant coaching for the same reason. Being stubborn and hard headed, she hated the constant coaching!

On the plus side, being stubborn and hard headed kept her mobile and fairly independent far past what her physicians thought possible!

So much of this disease is different from person to person.

By Emma On 2009.09.20 15:24
I have to say that I agree with Lohengrin, therapy can possibly give her some temporary improvement in her mobility and balance, but the Parkinson's won't get better. Unfortunately this is a progressive disease. Nonetheless, as I said in a post on another thread, my husband is getting physical therapy and occupational therapy and he has learned some tips and techniques that make things a little safer and easier for him and allow him to be a little bit more independent. He has dementia but he's able to remember a lot of what they have taught him ... sometimes with a gentle reminder from me. I know that eventually the disease will overcome the "improvements" but for now he's getting a little help so I think the therapy is worth trying.

By overwhelmedinFL On 2009.09.20 23:55
I guess once she gets here and settled I can get more into her meds with her new doctors group.

Ugghh. She is only 71. She is so hunched over just starting about 6 months ago. She gets her ustep this week. Like another poster said, she gets the therapy but I can tell she is not following it once the therapist leaves. For example..she leans to the right all the time and she is supposed to focus on her posture.

She will pull the chair back to sit at her PC and as soon as she falls onto the chair that is how she stays. She is often just sitting on one side of her rear end, leaning, hunched over and the chair is not squared up straight. It's too hard for her to move and so once she gets down on the chair..that is how she stays.

Getting in bed is very hard for her too. Are their tools to help with that? She doesnt have the strength to scoot on the bed, she struggles to get her legs up.

I am thinking she cannot live independent once we move her. I am wondering now if I should put her assisted living..ughhhhh Nothing like the cost of putting both your parents in assisted living at once.

Calgon take me away.

As always, thank you for your words of wisdom, your support and your experiences.

By annwood On 2009.09.21 12:18
I think the most common cause of therapy failure is the non compliance of the patient. I don't know that it is worthwhile. The pt. often does not have the strength to comply - moving in any manner is an effort. I there are cognitive problems the patient just can't remember what to do.

The bed issue - some things to try. Satin sheets help them move in bed. The medical supply house will have bedrails (good ones) that slide between the mattress and box spring with the railing moving out of the way when needed. This bedrail can be used to assist getting up in bed or turning in bed. Also look at the footstool with the railing on one side for stabilzation.

Many PD pts lean to one side and if you read past posts there really isn't much to do that will correct this.

Good luck. I think once your mother is closer to you an assessment will be easier and then you can decide placement.

By bandido1 On 2009.09.21 12:52
Overwhelmed: have your Dr. look at your mom. It sounds like dystonia, common in many Parkinsons patients. I began leaning to my right about two years ago. Occupational therapy did not help. Getting in and out of bed is also a symptom of the disease. Someone will have to assist her with that effort. Use of a hospital bed might help. I would recommend Home Healthcare as an alternative to assisted living arrangements. Finally, both you and your family need to get more educated on symptoms, treatments, stages etc. Google it! Bob C

Annwood: thanks for the assist. I'm still slightly off & my usual sense of humor has disappeared---temporarily I hope! Bob C

By susger8 On 2009.09.21 14:54
Bandido has a very good point about home care vs. assisted living. I have become less than enthusiastic about assisted living for people with PD. Assisted living is really meant for people who are pretty independent, and someone who actually needs assistance doesn't seem to get as much as they probably need. A home health aide can give 1 on 1 assistance -- you will never see that at any kind of assisted living facility, they just don't have the staff for that.

My observation is that a lot of people with PD can only get along in assisted living for a relatively short time, and then the next step ends up being a nursing home. But if they remain at home with a health aide, they can stay out of a nursing home a lot longer.

I have many blessings for the social worker who recommended the home care route to me for my father. It turned out to be a good call.

Sue

By WitsEnd On 2009.09.22 16:58
Therapy didn't help dad and his mental state was a factor I think. The falling started for him at the end of the disease and his dementia was pretty bad. Medicare covered it so we tried it. You do the best you can.

I agree with Sugar8.....usually assisted living is for people who don't have dementia or can walk and don't have falling issues. That doesn't work for most PD patients at some part of their disease. I think that by the time everyone accepts that the PD patient can't be by themselves anymore that the disease has usually progressed such that assisted living isn't really an option for them either.

Even if you consider assisted living now......plan ahead and have a secondary plan. It takes time to locate a good nursing home or find a good sitter--start looking and thinking about it before you need it. What will you do when 24 hour care is needed....one person can't do it for very long at least. Is there enough depth of support there? Do you have a plan to get extra support?

My mom always said "hope for the best, but plan for the worst"....

By overwhelmedinFL On 2009.09.22 20:13
Oh no. I just got mom and her husband into an ALF today. Not physically but they will be moving this month.

Bob I am sorry if it doesn't seem like I google but I do, I promise. I spend so many nights researching this on the computer it is not funny. My mom does have dystonia.

I had never heard that about home health being better than ALF for PD people. I have not gone to enough doctors visits etc with my mom. She lives out of the area. I will be much more involved when she gets into town.

She is not open to living with me now due to her husband being with her still. He would not live here because I have little children. Don't say I blame him. Once he passes (he is older than she is), mom is more than welcome to move in. We built our house with an inlaw suite for her. Now I realize it will not be big enough for her to get around so we will give her our master bedroom and master bath. She can stay her as long as she wants and I will take care of her and hire help as needed. I would be more than happy to do that for her.

She is an amazing woman and I would be blessed to have her here with me. I told her she has to do all my laundry though :) (joking of course).

I promise to read more posts before asking quesitons again. I was just so happy when I found this forum.


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