I just borrowed a book from the library: FUNCTIONAL FITNESS FOR EVERYONE LIVING WITH PARKINSON'S by David Zid. It has exercises to help with daily living such as rotation, posture, balance, getting out of a chair, or out of bed or out of the car, getting dressed etc. You would need to choose wisely what is safe and realistic for you... moving is good... do what you can.

@A MyParkinsonsTeam Member, Viriya has an excellent point. I find that if I advocate for myself I come across either as a Wild Man or as unbelievable, but when my sister, my friend or my VA caseworker solicits help it happens.

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A MyParki...

Get a new PT who is certified in the LSVT Big program and also focuses in PD patients. Same thing with your neurologist, they need to specialize in movement disorders. I found this out the hard way.

Just a few suggestions about getting help. I went through a difficult period last year when i suddenly worsened and living alone i didn't know what to do. I sat down and figured out quite specifically what i might need from other people. Then i requested help from a friend in finding people to meet those needs. I didn't have the energy to organize it, but with someone as my advocate it worked out quite well. What i have found is that most people either don't know you need some assistance or they do not know what to do. Many people are willing to pitch in if they, can choose a specific task; ie driving you to appointments, etc.
You may have to be more proactive than what is comfortable but oftentimes the result is mutually beneficial. It is hard to ask for help which is why someone asking on your behalf might be easier. Is there a Parkinson's support group in your area?
Hope this helps, will be thinking of you,, Viriya

HI, @A MyParkinsonsTeam Member. I have been reading your various posts and am wondering where you got this PT from; the VA? --he or she wants YOU to find PD-specific exercises that the PT can then help you do ??!! Seems backwards and crazy to me. Not every PT or speech therapist has the same knowledge base. Many know techniques that are specifically helpful for people living with PD, such as LSVT-BIG (PT) or LSVT- LOUD (speech) therapy. If there any way you can get an appointment at the U of Alabama/Birmingham (near you, I hope), they have a center for PD and movement disorders that can potentially help. Online, I see the contact person listed as: Laura Lieb, RN, MPH, Nurse Coordinator, (Phone number can only be seen by the question and answer creators), [[email: [[email: (Email address can only be seen by the question and answer creators) . If they are anywhere near you,it might be worth putting out the tremendous effort to coordinate at least a one-time appointment there. There are private wheelchair van services that could get you there perhaps. Staff at UAB may have transportation suggestions. They might be able to work with you to develop a tailored exercise program.

Sorry that I don't know the geography of your area to know whether they are local enough to you, but it still might be worth calling there to find out about closer resources.

I hate to be judgmental, but it just doesn't sound like you are getting the specialist care that you need. Given you various medical comorbidities, it sounds like you are not in the right hands. Even though your other children may be far away and your son who lives closer to you has a bad back, this does not mean that they cannot help you problem-solve your situation, at least to improve your daily life somewhat. You need support to get through this rough time. It sounds like things have gone significantly downhill since last summer, when your wife had her own medical problems. Have you thought about calling other family members for short-term help/support so you can get better medical care? When you are experiencing accelerated disability, you may really need the type of person who can serve as your advocate. If that cannot be your wife now, you need to YELL for other family members to help. I know that it isn't easy to ask for help, but it's got to be harder to live the way you are living now.

My heart goes out to you,

Karenr

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