Wow she has had a rough time and so have you.

I have a thought/question. In rehab she is stimulated everyday by people trained to be as positive as possible. Once she gets back home she falls back into a quiet routine, I think. Is she participating in activities with others that would stimulate her and provide some positive influences.

She may be going downhill, but how much of that is being caused by shutting herself in. I would guess she has become afraid of falling, that also may cause her to withdraw. I may be 100% off in my thoughts, but most of my life has been taking care of family members and being there for them as they cross over into peace. I could see that being around family was not as stimulating as being around others.

Wishing all well, I know it is a challenging journey. Stay strong. Please let us know how your MIL does.

It is so true. We credit the nursing home where my mother is for keeping her alive!!! They really know how to take care of her and when they drop the ball thank goodness my sis and I are there to remind them. For the first time in her life she goes to exercise class. We asked her to do it for us because Hospice was brought in and Medicare no longer pays for physical therapy. We are trying to get her strength up so the nursing home will think she is well enough to go back into PT so we can fire the stupid Hospice. The nurse make nasty faces at my sister and I and always argues with us.

It is so difficult when a loved one hast to deal with things such as aspiration which is very painful, scary and uncomfortable. Each person with PD is different and no two are alike. That being said, if you MIL is aspirating she is at risk of getting a pneumonia which is very hard on the body and can sometimes jeopardize one's life. Swallowing problems are not uncommon to PD. I do think it makes it very difficult for the person with PD as well as the family looking on. Make sure that her fluids are always thickened and that the person feeding your MIL is going slowly and is giving fluids is small amounts. I have seen individuals feeding pt's with swallowing difficulties going far too fast and giving far too much.

Has she had a swallowing assessment done lately? May be they need to reassess her and treat her accordingly. I wish you luck and peace! take care

The Hoehn and Yahr scale is a commonly used system for describing how the symptoms of Parkinson's disease progress. It was originally published in 1967 in the journal Neurology by Melvin Yahr and Margaret Hoehn and included stages 1 through 5. Since then, a modified Hoehn and Yahr scale was proposed with the addition of stages 1.5 and 2.5 to help describe the intermediate course of the disease.


Stage Hoehn and Yahr Scale Modified Hoehn and Yahr Scale
1 Unilateral involvement only usually with minimal or no functional disability Unilateral involvement only
1.5 - Unilateral and axial involvement
2 Bilateral or midline involvement without impairment of balance Bilateral involvement without impairment of balance
2.5 - Mild bilateral disease with recovery on pull test
3 Bilateral disease: mild to moderate disability with impaired postural reflexes; physically independent Mild to moderate bilateral disease; some postural instability; physically independent
4 Severely disabling disease; still able to walk or stand unassisted Severe disability; still able to walk or stand unassisted
5 Confinement to bed or wheelchair unless aided Wheelchair bound or bedridden unless aided
This rating system has been largely supplanted by the Unified Parkinson's Disease Rating Scale, which assesses limitation of daily activities and non-motor symptoms in more detail.
Time between stages[edit]
A 2010 study of 695 patients (mean age: 65.2, male: 57.3%) found the median time taken to transit H&Y stages as shown below:

Stage Median Time to Transit (Months)
1 -
2 20
2.5 62
3 25
4 24
5 26

The unified Parkinson's disease rating scale (UPDRS) is used to follow the longitudinal course of Parkinson's disease. The UPD rating scale is the most commonly used scale in the clinical study of Parkinson's disease.[1]
The UPDRS is made up of these sections:[2]
Part I: evaluation of mentation, behavior, and mood
Part II: self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food
Part III: clinician-scored monitored motor evaluation
Part IV: complications of therapy
Part V: Hoehn and Yahr staging of severity of Parkinson's disease
Part VI: Schwab and England ADL scale
These are evaluated by interview and clinical observation. Some sections require multiple grades assigned to each extremity.
Clinicians and researchers alike use the UPDRS and the motor section in particular to follow the progression of a person's Parkinson's disease. Scientific researchers use it to measure benefits from a given therapy in a more unified and accepted rating system. Neurologists also use it in clinical practice to follow the progression of their patients' symptoms in a more objective manner.[3]
Following the UPDRS scores over time provides insight into the patient's disease progression. For instance Michael J. Fox's symptoms started with a slight tremor, so his motor score would have been less than 10. For most patients, the "mentation, behavior and mood" scores increase later in the disease, but a subset exists for whom those symptoms develop early on.

In 2007, the Movement Disorder Society (MDS) published a revision of the UPDRS, known as the MDS-UPDRS.[5] The revision became desirable after an MDS-sponsored Task Force on Rating Scales for Parkinsons Disease highlighted the limitations of the original UPDRS.[6] Two major limitations include the lack of consistent anchor among subscales and the low emphasis on the nonmotor features of PD.[5] The modified UPDRS retains the four-scale structure with a reorganization of the various subscales. The scales are now titled; (1) nonmotor experiences of daily living (13 items), (2) motor experiences of daily living (13 items), (3) motor examination (18 items), and (4) motor complications (six items). Each subscale now has 0-4 ratings, where 0 = normal, 1 = slight, 2 = mild, 3 = moderate, and 4 = severe.

You can use this info to further delineate/and or research, what stage your mil might be in.

Brer T

Here are some good references to help. I use these among others as a basis for systematically rating myself.

Ramaker, Claudia; Marinus, Johan, Stiggelbout, Anne Margarethe, van Hilten, Bob Johannes (1 September 2002). "Systematic evaluation of rating scales for impairment and disability in Parkinson's disease". Movement Disorders 17 (5): 867876. doi:10.1002/mds.10248. PMID 12360535.

Comprehensive pharmacy review, Leon Shargel, 6th edition, p. 998.

"Frequently Asked Questions" (PDF). Parkinson's Disease Foundation. 23 March 2009. Retrieved 31 January 2011.

Rosenbaum, Richard B. (2006). Understanding Parkinson's Disease: A Personal and Professional View. Greenwood Publishing Group. ISBN 978-0-275-99166-1.

Goetz, Christopher G.; Fahn, Stanley, Martinez-Martin, Pablo, Poewe, Werner, Sampaio, Cristina, Stebbins, Glenn T., Stern, Matthew B., Tilley, Barbara C., Dodel, Richard, Dubois, Bruno, Holloway, Robert, Jankovic, Joseph, Kulisevsky, Jaime, Lang, Anthony E., Lees, Andrew, Leurgans, Sue, LeWitt, Peter A., Nyenhuis, David, Olanow, C. Warren, Rascol, Olivier, Schrag, Anette, Teresi, Jeanne A., Van Hilten, Jacobus J., LaPelle, Nancy (1 January 2007). "Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS): Process, format, and clinimetric testing plan". Movement Disorders 22 (1): 4147. doi:10.1002/mds.21198.

Movement Disorder Society Task Force on Rating Scales for Parkinson's, Disease (July 2003). "The Unified Parkinson's Disease Rating Scale (UPDRS): status and recommendations.". Movement disorders : official journal of the Movement Disorder Society 18 (7): 73850. doi:10.1002/mds.10473. PMID 12815652.

"Parkinson's Disease Diagnostic Criteria". BMJ. Retrieved 8 May 2012.